When the fog clears, tea's on the list.

 

Recently I have been having trouble remembering things. At nearly 70, I worry about dementia and think that maybe I am going down that path.

But in talking with people who suffer from fibromyalgia like I do, I realise that fibro brain fog can make one forgetful. Especially during flares.

Having just moved house about 6 weeks ago, I am just starting to recover physically. I have a flare that is pretty constant with no spoons and I do forget things. And words mid sentence.

I don't think me forgetting to order tea in the online grocery order really means I  have dementia. I guess fibromyalgia flares can do that.

Looking through Marketplace the other day, someone was selling a bassinette identical to the one I had for my 4 children. It brought back memories like they were only yesterday.

But that didn't make me feel very at ease about my forgetfulness because dementia robs one of short term memory. But then so does fibromyalgia.

Considering all my previous times of brain fog during a flare, and my subsequent good memory, I surmised that it was not dementia, but brain fog from said flare. 

I believe when the flare abates, and the fog clears,  I will remember the tea in next week's shopping list. 

For me, it's spoons!

It's Sunday morning here. I have brought in the online groceries and checked them off and put them away. 

I will soon be taking Chris's bloods and doing breakfast. Breakfast will be eggs and bacon and a cup of tea. Lunch will be ham and salad sandwiches. For dinner, I am doing a vegetable intensive beef stew. Fresh fruit for desert.

There's a hamper of clean clothes to fold and then I will be up to date with washing. Later I plan to make some coleslaw, if spoons permit. 

That's about it for today, except for cooking dinner. I don't want to put myself into another fibromyalgia flare or I won't have spoons to help my daughter tomorrow. As I always say: most jugglers juggle balls, for me it's spoons! 

A big part of my life

It's 11.30 Saturday morning here and already we have been to have blood tests, come back and had breakfast and I have done a load of washing, folded clothes and stacked the dishwasher. 

They weren't able to get blood from me today so I have to come back Monday. This in spite of drinking water beforehand. 

Chris is sleeping and I am thinking of having a nana nap as I have no spoons left. So tonight I will be cooking pork chops with mashed potato and salad. I may serve a fruit salad for dessert.

The fibromyalgia is flaring and I am aching all over. I haven't recovered from the move yet. In spite of knowing I could/should do some more around the house, I know that I need to rest or tomorrow will be a repeat of today. Pacing and resting are now a big part of my life since fibro.

I think I could sleep on the freeway.

We visited the doctor today.  I have extremely high blood pressure which the doctor feels is due to my fibromyalgia pain.  It has flared since the move and I have gone grey overnight.

He is increasing my antidepressants as I am stressed to the max. He believes they may help in my fibro pain. He has not offered anything for pain as yet. 

I feel totally exhausted and I need to help Dianne for the next month as she can't drive.  My spoons are gone before I surface each day.

My exhaustion is such that my legs feel like they can't hold me up. Yet like helping my daughter and looking after my sick husband, there are things that just have to be done.

My grandson walked to our place from school today and found no clean cups for a drink. I told him he will have to wash one out for himself as I have been so unwell that I haven't been able to stack the dishwasher.  

He selected a picnic cup instead of washing one and then asked to be driven home. I felt guilty that my kitchen is a mess but Chris has fluid build up in his lungs due to living with heart failure and hasn't been able to help.

As a fellow counter of spoons, he has to save them for driving Dianne to doctors' appointments and physio, so I do not ask that he helps with the housework.

My extra antidepressants are kicking in and I am feeling tired as we speak. I must straighten my bed first as it is very uncomfortable as it is. I need a good night's sleep.

It is true that you sleep better in a tidy bed. The way I feel right now, I think I could sleep on the freeway. 

I am too tired to shout!

Today is Monday morning. I have to do some washing and restack the dishwasher. I have run Sadie the Roomba and am about to do bloods, meds and breakfast. 

Later on at 11 a man is coming to do some flatpacks of furniture for us. I am hopeless at this and Chris can't do it anymore. It's a coffee table and TV lowline unit. It's $40 an hour but we had to factor that in when we bought them. It is what it is! 

At 2.30 we have to pick Dianne up and take her to a doctor's appointment. Then I have to go to the chemist and get her meds made up. 

It's supposed to rain for the next 10 days and the rain has been consistently heavy and constant. I think we are going to need an ark soon.  It is making my fibromyalgia worse, and I am pushing myself to get Di to doctors and physio. 

I will neverthless be busy with doctors and physio for the rest of the week and possibly next two weeks or more. I am glad Di's knee has been done though. It's all over bar the shouting! With no spoons at all, I am too tired to shout! 

More spoons to enjoy life.

We have just moved and we are both quite tired still. Although the house is functional, there's still a lot of unpacking to do.

This weekend, two of our grandchildren wanted to come see us and give us their verdict of the new house. Knowing that memories are all we will have once they are grown, we agreed to have them.

Although I am suffering from a bad fibromyalgia flare, I got dressed and stayed up in order to spend time with them.

We cooked lunch together and watched family videos of when they were first born and growing up. It was fun but it was also non taxing to my sore body. 

Today I am expecting a lady to come clean for a couple of hours. She did such a good job of cleaning our old house for our bond return, that I asked her if she would like to do a regular clean for us once a fortnight. She agreed.

With my poor daughter suffering from fibromyalgia as well and now living two minutes away, she also agreed to clean her house after ours each fortnight as well.

Both my daughter and I are finding just cooking, cleaning our kitchen, doing washing, grocery shopping, running errands like going to the chemist, planning finances and feeding our pets is enough of a job. We need some extra help.

There's very little help here for chronically ill people who can't do housework. What little we did get has been stopped since a new government has taken over the reins. So we have to pay privately.

I am grateful that I can save enough each fortnight to afford a cleaner's help. It not only keeps my home clean, but gives me more spoons to enjoy life.

 

Pain is a disability

Anyone who suffers from chronic pain knows that it precludes us from a lot of enjoyment of life. Pain makes the vicissitudes of life that much harder to bear. 

Everything is exaggerated both physically and mentally, and the only thing I can do is accept that this is not my usual self, for pain changes people.

Pain disables us in many ways. from physical activity. from family life. from sex. from sleep. from patience. from social life. from functioning normally. from life generally.

The effects of pain cause us to withdraw from people and become reclusive. It makes us feel isolated and unable to really feel understood or validated. We learn to be distrustful of others.

Because chronic pain, in my case fibromyalgia, causes us so much mental as well as physical angst, we decide to retreat to our home often preferring it even if we had enough spoons to leave.

Seeing as pain is such a disabling affliction, it makes no sense to me that we are often regarded by doctors with suspicion when we request heavy duty pain relief such as opiates.

Most of us cannot get enough medication to adequately help us with our pain. We often then succumb to depression and live as recluses  due to agoraphobia. 

We who suffer from chronic pain know that it is a disability. Invisible and destructive. We live in the knowledge that pain is disabling. 

We just wish doctors were as aware of the ongoing relentless disability called Pain.

We aren't just tired: we're dead tired

A woman who suffers from a chronic illness or disability often finds herself at the end of "normals'" ideas of being tired. We are often looked at with contempt for being so tired that we can't perform our daily duties properly. Or that we have to go to bed early, rise late, or cancel social engagements at the last minute. We are not lazy. 

Before Corona, we were regarded with suspicion when we couldn't make it to church regularly and people harshly judged our spiritual health, deeming us backslidden.  Emotional and spiritual hurt exacerbates our ill state. We feel worse and they lack compassion.

Often we have to cancel doctors' appointments because we are too sick to get there. We find we can't drive and even if we could, we haven't got the strength to even get washed and dressed. It is not unheard of that some of us have crumpled in the shower, unable to get out and totally winded...

Our "tired" goes far beyond a sleepiness or drowsy feeling. We are so fatigued that breathing is too much effort and not for the first time we are grateful it's automatic.

Furthermore, our "tired" is not helped by a nanna nap or even 9 hours of sleep.  We fight our illness and pain even in our dreams and wake up unrefreshed and have to face another day when we haven't recuperated from the day before. We simply have run out of spoons.

"Tired" is overused and doesn't come close to the bone sucking quagmire of desperate fatigue we chronically ill people find ourselves sinking into constantly.  To have "normals" flippantly say, "Me too!" when we tell them we are tired invalidates us and makes us long for their brand of tiredness that can be restored through a good sleep.

We cannot even enjoy a shower or bath to help us sleep as the effort it takes to do this not only drains us of whatever energy we can find, but does not always bring a restorative sleep. Just muscle pain.

Such is my own pain on going to bed that I find I cannot place my arms anywhere comfortable. My fibromyalgia and polymyalgia rheumatica make it impossible to raise my arms upwards and extending them hurts my muscles and tendons. So I go to sleep with my arms folded on my chest.

I indeed look like a cadaver which has been laid out and testifies somewhat to the feeling of being dead in my tracks.  Because that's the type of exhaustion we face every day: we truly feel dead tired.

© Glenys Robyn Hicks

Cast me not off in the time of old age; forsake me not when my strength faileth. Psalm 71:9

It's a pain in the neck

 

Lately I have been trying to keep off the computer. I have had a horrid fibromyalgia flare and I suspect along with neck and shoulder pain, I have also got TMJ and polymyalgia rheumatica back as well.

We  recently sold our GMC Sierra ute and with no more vehicles needing a driveway to park on, we have turned our attention to finding another rented home. It has proven to be a nightmare.

There are not many affordable homes to rent and we find we are vying with up to 20 different people at a viewing, all hoping to get the same property. It is terribly stressful.

I think the stress has exacerbated my fibromyalgia. I have been clenching my jaw and this has seen my TMJ return. Without a blood test to check ESR creatines and so on, I can't say that my PMR has returned, but judging from the pain and inability to raise my arms, I would not be surprised.

I have done 5 loads of washing and dryed it in the dryer as it's too painful to hang it outside. I have run the dishwasher and been to the chemist to pick up my Januvia for my diabetes. Just that small bit of work has exhausted me. My spoons have left the building.

Lately I have been thinking it isn't worth moving, but the possums in the roof wake me up with their thumpings and scratchings and the cold weather has meant that central heating is calling my name and beckoning me to a newer more modern abode.

Just typing to you has stirred up all my sore muscles, and it's traveled down my arm. So I will be taking some paracetamol Osteo soon and maybe I'll be having a nana nap.

Fibromyalgia, PMR or plain arthritis makes for a bad day by any name. Whatever ails me, it boils down to the fact that today, it's a pain in the neck. 

 

And the icing on the cake is...

Friday we went to the chemist and were treated to a cup of tea behind the counter. In between customers, we chatted and caught up. 

We were amongst the first of their customers and we have gone solely to them and rejoiced with them as their business grew. 

We don't go out much, and he and his wife know this. They are lovely people and we will miss them if we find a new rental- so much so, that we have decided we will still go to them for our prescriptions. 

Thanking them for their hospitality, they asked us to call in every Friday for coffee. Well, it looks like Fridays will be script days!   

In saying that, it will depend on whether my fibromyalgia allows me to travel. There are days when I just want to stay home as my spoons are few. But  just knowing that whenever we do see them, we will be welcome and missed is precious.

It does get lonely sometimes here. It's nice to have friends. The icing on the cake is that they are Christians! 

We just have to embrace it

We have been looking for another house closer to family. We have applied for one yesterday and had a phone call from the real estate this morning which sounded positive. 

Our fiver got to South Australia to its new owner and they rang us to tell us how pleased they were with it. So that's good. 

We are taking our GMC Sierra to the mechanic for a good overhaul Monday and then we will decide what we will do with it. Over here they are seen as a luxury ute and we think a young buck would love it. That's what we are hoping. 

My twin and son and granddaughter continue to recover from Covid but are still very much under the weather with it. 

I am convinced that our prayers have helped keep my twin. She's so many serious health issues such as lupus and I was afraid for her. 

I have done a load of washing, cleaned my kitchen and am about to make some lunch.  I have a flare of fibromyalgia again and my spoons are nearly all gone.  I will be  taking a nana nap soon.

With an imminent move, I am not looking forward to the energy output, however I am looking forward to being nearer family.

I will miss the birds and our feral cat who is gradually becoming less timid as we feed him. We have named him Teddy Bear as his face is surrounded by bushy fur and he is gingery brown and looks like a teddy.

But I know in  life that one rarely gets everything one wants and so we have weighed up staying or moving. We have decided that we want to be closer to family, particularly our daughter who has had leukaemia.

With a bird bath/feeder and garden swing to take with us, we will continue to feed the birds as we watch from the swing in the garden.

It's true what they say: nothing is sure except death and taxes. Life is full of change. We just have to embrace it.

Spoons aren't transferable

 

So this morning I needed a shower as I have an important appointment later on in the day. With being home most of the time, I have been fairly relaxed about it, but not today.

I did our bloods, gave Chris his insulin injection, ate breakfast and ran the shower. It was heaven on my aching muscles and I let the water run on my sore neck and back. I washed my hair and body and then started to feel weak.

Out of spoons, I sat on the side of the bath trying to catch my breath and get my second wind. It didn't come. 

By the time I had finally got dried and dressed, I was literally shaking and sick with fatigue.

Looking at the clock, I realised that in a few hours I will be leaving the house and walking around. Which normals think as normal, but us sufferers of fibromyalgia and other chronic illnesses know, we have to balance everything in the spoon equation. Once spent, they're gone! 

Sitting down to rest and trying to garner some spoons of energy, I realised once again that I simply cannot shower on days I have to go out to an appointment that simply cannot be postponed. 

You would think after 22 years of fibromyalgia that I would have learned that spoons aren't transferable.

© Glenys Robyn Hicks

 So teach us to number our days, that we may apply our hearts unto wisdom.  Psalm 90:12

More than a cake

So yesterday was my 69th birthday. We went to my twin sisters & my sons house for lunch to celebrate.

I really appreciated my sons' effort at the surprise cake he made for us. He's never made a cake in his life. We sang Happy birthday but we all decided not to light 69 candles in case it set the smoke detectors off. He put a few on for traditions sake.

We bought some KFC and enjoyed the family feast barrell. We had just enough chicken to feed four adults and we found we wouldn't need to have a cooked dinner.

This worked out well as I was suffering with a fibromyalgia flare and in fact almost didn't make it to their place for lunch. You know how it is: you arrange something for the next day, and you don't have any spoons when you wake up.

But as Chris pointed out, he was driving and I didn't have to do anything except sit there. So I went.

The trip is one and a half hours each way and I was so tired on the way home that I fell asleep in the car, garotting myself on the seat belt.

So not having to cook when I got home was a blessing. We just had some fruit and a cup of tea. It was enough.

My son lives with my twin who is ill with lupus. He's her carer. He cooks plain meals but never has baked a cake before. So when he brought out his birthday cake, I was more than a little surprised: and the other surprise was that it tasted good as well!

As we blew out the candles, his face was glowing with pride and satisfaction. I saw more than cake yesterday: I saw love!

"It is what it is!"

A friend of mine posted this on her Face Book wall and it was so simple and doable that I wanted to share this with you.

My hands are deformed with arthritis and I have little strength in them. Opening these ring pull cans have always been a challenge to me. 

Those cans that need a can opener are  simply not purchased anymore. I cannot use one as the arthritis restricts movement.

My fibromyalgia is paining me today and I didn't sleep well last night, so I will be cleaning my kitchen and psyching myself up to take a shower. That and cooking meals is all I will be doing today.

Meals will be Jewish Penicillin in my slow cooker.

It's not much to show for the vast amount of spoons I will need today, but as the young ones always say, "It is what it is!"

It's not a contest

Sometimes I feel guilty for letting off steam at times but I really believe I could have a bit more support than what I am getting. 

We sometimes have words during my fibromyalgia flares and when I have polymyalgia rheumatica at the same time, it can make me scream in desperation. I just want a hand. It helps me emotionally as well as physically and I feel nurtured.

I know my husband is unwell and he has my understanding and utmost sympathy. But sometimes, the pain gets so bad and I have so little spoons that I will yell at him to come and make his own cup of tea or whatever.

After words,  I often cry because I aren't usually like that.  Pain changes people.  Especially unrelenting pain. And unrestorative sleep. Especially that.

Yet, to those who don't know the desperation that pain drives you to, they would just think I was being unreasonable and using my fibro to elicit a response from Chris. 

It's not that at all. Our health issues mean that there are times when we have to help one another. And lately when Chris is not well, I find I am left to push myself beyond my own comfort level while he sleeps on the couch.

His pain is not at the same high level mine is. His health issues relate to other issues regarding heart problems. But his issues are difficult for him to bear. I know that. 

Chronic illness in both people in a marriage presents its own problems. Each one having pain that makes the eyeballs bulge, causes arguments of who'se pain or condition is worse than the other's. A form of validation if you will.

But here's the scoop about chronic illness. It's not a contest. Just another thing about chronic illness that most don't understand. 

He works in mysterious ways

So last Thursday I ordered my online Easter grocery shop. The driver had just taken off after delivering our order and immediately on starting to put it away, I noticed a bag that I hadn't ordered.

In it were four packets of frozen Hoki fish fillets and 2 packets of sweet potato fries and 2 packets of sea salt and rosemary chips.

I quickly rang the supermarket online customer service. There was a wait of an hour to talk to a human, so I "talked" to the AI bot there called Olive.

Olive was of no use to me. She told me to keep the goods as it was the supermarket's fault and accept them with their compliments.

The bot also told me there were no deliveries the next day as it was Good Friday, so obviously there was no way to get the bag of frozen foods to the correct purchaser.

I felt quite sad for the lady as I imagine this was what she had planned to feed her family Good Friday. I had done all I could but I couldn't help but feel sorry for her. I had been in a similar situation last Christmas and it's not nice.

I hope the lady was able to rustle up something else for Good Friday. Seeing as I have the fish and chips here I plan to use them Wednesday when family come up for lunch.

With my fibromyalgia flaring and a recurrence of polymyalgia rheumatica, I don't want to be cooking as I am out of spoons and in pain.

During this particular time, we had no spare money for extras which included Easter eggs for the grandchildren. They get plenty of chocolate, so they won't go without, but it was a bit difficult to not be able to give them any this year.

That extra food will come in handy as I haven't done another weekly shop and can't until next week. I guess the LORD has provided for our needs and for that I am grateful. He does work in mysterious ways sometimes! 

 

A helpful guide

As reported on the news, there will  be food shortages in the future, so I have been building my pantry and freezer up.

I am not living in fear, but rather I am trying to emulate that wise woman in Proverbs 31. She was not afraid of winter because she was prepared. I want to be prepared too.

As you probably know, I have been cooking extra meals and doing a cookup on days I have some spoons. It's been working marvellously well for me. Especially for those days when my fibromyalgia is flaring. I simply grab and defrost a couple of meals and dinner is done.

I make sure everything is clearly marked and dated so that I can rotate the food and not have it sit there until it is out of date.

One thing that I noticed when freezing my meals is that the label came off and I couldn't identify what the meal was and how old it was. So I read that masking tape doesn't fade or come off easily and I did that. It's true.

I came across this guide of shelf life for pantry items and I posted it here for our easy reference. Goodness knows, food's too expensive to waste, so this should be a helpful guide. 

 

Ordinary but good

It's Friday morning here. I have just finished putting the groceries I got online away. It's so convenient for Chris and I seeing as we both are unwell

I have done a couple of loads of washing and am thinking about doing some lunch. Toasted cheese and tomato sangers sounds good and easy.  

My kitchen needs to be cleaned but I am out of spoons as I didn't sleep well last night. The weather is changing as it's autumn here and we can experience all seasons in one day. It plays havoc with my fibromyalgia. It's making me feel miserable.

I am thinking of taking a nana nap before I do the kitchen. But before that I will take some Panadol Osteo   to help relieve my fibro pain. Pacing and resting are not an option with fibromyalgia: it's a necessity. 

After I clean the kitchen I will cook chow mein and rice for dinner and if I have enough spoons I will fold the day's clean clothes and put them away.

It's an ordinary day here and I am glad. When you think of what's happening in the world, I can truly gratefully say that God has blessed me with a day that's ordinary and good! 

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.