Searching for some spoons

                                          

So Chris wasn't feeling well, so we didn't get out yesterday. I ordered $30 worth of groceries through Woolworths online. We have to pick them up at 1pm. It's so handy to shop like that. After that I need to get some prescriptions made up and go to the Post Office.

I managed to do all those dishes yesterday, with just last night's pots and pans to wash today. Tonight I will shower. If I do it this morning, I will run out of spoons and won't make it for the errands later.

It's hard searching for spoons and finding none, knowing that you have to do certain errands like shopping and getting medicines. And the tricky thing is when you find some, they disappear before you can put them to good use, and you find you need to take a nana nap just to accomplish it.

I know with talking to other Fibromites that I am not alone, as having no spoons seems to be a typical symptom of fibromyalgia. So for the next few hours before I pick up the groceries, you know where I'll be: searching for some spoons.

I'm my own worst enemy!

When I have no spoons or motivation to do housework, I often watch Youtube videos of people cleaning their home. Sometimes it works and I feel that I can get something done.

This can sometimes go against me because often the videos are of women half my age, with no disabilities and therefore no need to worry about spoons or flares or having to take a nana nap.

They seem to be cleaning houses that are already immaculate and they make it look so easy. Their homes outshine mine in every way, and so does their appearance. It can make me more depressed if I am in a flare of fibromyalgia, trying to get motivated to clean and teetering at the edge of the Pit of Despair. 

So I have to take Chris's advice and remember that I am an older woman with chronic health issues and try not to compare myself with them. But the desire to kindle a spark of motivation is strong and I find myself gravitating to those videos like a moth to a flame. And often it only makes me feel worse!

Sometimes, I think I'm my own worst enemy! 

It has a comforting ring to it.

In these last days before the Rapture of the Church, we are buffetted about with trials and tribulations and pestilences.

We are shaken and we are tired and the finishing line is just ahead. As the darkness of a sick world falls we would do well to remember that although we may feel that world is out of control, it is exactly as God told us it would be in these final days.

These trying days, the Body of Christ must pray for each other and encourage each other to run their race well. We know that the Age of Grace will soon be over, and Christ will translate the Church- us believers into His Kingdom. Therefore, we must tell the lost about Him and do so until that time comes.

This translation of the Church into God's Presence is called the Rapture and according to the Word, we are now observing many of the prophecies we were told to look for, coming to pass daily. This means the Rapture is soon.

Not being able to go to church anymore due to illness through fibromyalgia, mobility issues and angina mainly, I find great comfort in the fellowship of believers through the internet. It's terribly important that we do not forsake the gathering together in corporate worship as support for each other is critical to us running our race well. But like myself, if you can't get to church, try to build a network of Christian friends who will pray for you and support you  It's difficult, it's tough and it's scary!

At the rapture I believe we'll all stand before God still holding each other up and lifting the weary hands that had hung down.  This special relationship is called KOINONIA. :1. the Christian fellowship or body of believers 2. intimate spiritual communion& sharing in a common religious commitment& spiritual community

Let us spur each other on to love and good works and let us pray for each other in Koinonia. We need to be there for each other and watch each other's backs. That's what family do. We are all sons and daughters of the Most High and we share the same Father. So let us truly enjoy Koinonia in these testing times. 

Koinonia: it has a comforting ring to it. 

© Glenys Robyn Hicks

And let us consider one another in order to stir up love and good works  Hebrews 10: 24

It makes my spoons quiver!

So yesterday we had more family come for Christmas. We had a lovely lunch, feasting on the abundant leftovers from the feast on Christmas Day. 

Because I had pushed myself physically the day before, my fibromyalgia was flaring and my back was spasming because I had been on my feet preparing food for a long time. I was feeling overwhelmed.

I was feeling hospitable, it was just because of pain that the day was on a downer for me personally. I tried my best to be cheerful. We Fibromites and chronically ill people become consumate actors in playing the cheerful game.

My step-daughter was very gracious and helped me make teas and coffees and carve left over ham, and not for the first time, I was very grateful to her.

With 35C temperatures- 95F, I was also very grateful for our air conditioner. The dining area was very comfortable and we passed a pleasant day.

My little 4 year old great-granddaughter Evie came to me and asked me to show her my bedroom. So taking my hand, she led me to my room, looked at the ensuite, and declared, "Nana, I love your house, and I love you too!"  It made my day.

Her declaration of love warms my heart even now as I talk to you. I am sitting here in fibro pain with my two freshly broken purple toes throbbing. (I kicked the corner of the dining table leg, collecting two toes for the price of one.) But the happiness of my little lovely Evie's declaration overshadows even the pain today.

The house is tidy, the washing in the machine and the Christmas tree and decorations are put away. My robotic vacuums have been run today. We are now officially post Christmas.

We placed the tree still decorated into a closet that is empty, and should the LORD tarry, it will be a simple matter to reinstall it next year. Not that I really can imagine another Christmas right now. 

Quite simply, nice as it was, it makes my few remaining spoons quiver! 

It's all I can do this year!

So I did a thing that stripped me of what little spoons I had. I took a shower and went to click and collect a few Christmas gifts I ordered on line.

I came home and cooked dinner and had a bad asthma attack. I couldn't breathe properly. Chris tidied up the kitchen for me and I sat down for a while until I felt better.

The Mother of all Fibro Flares has paid me a visit. I ache everywhere and feel too exhausted even to talk. It is nearly 11am here and I am ready to go to bed. I will have a nana nap.

You just have to listen to your body in times like this. Hopefully I will wake up with some spoons Christmas Day.

As we now have a large enough home for guests, we will be hosting Christmas this year. I am having a simple traditional meal and that's all...

I am too pooped to worry a great deal about Christmas this year. We have bought a few things online and that will have to do. Sometimes you just have to rest your tired twinkle! 

Apart from cancelling Christmas, it's all I can do this year!. 

Failing fast

You may have noticed I haven't been posting much lately. Fibromyalgia, heart disease, high blood pressure and now boils have taken over my body all at once.

My body is failing me and the fatigue is not only sapping my strength but my mental faculties. It is hard to formulate a sentence these days.

I have been to the doctor. My blood pressure meds have been increased (200/86) and that in itself makes me tired.

These days it takes me all my time to look after Chris and my home. Forget socialising.

I am on the strongest oral antibiotics, taking 9 a day. They have brought the boil on my spine to a head. I am waiting for it to pop itself, rather than try to squeeze it. Though I think I would die from the pain if we tried to do that. The boil is quite large.

I pace myself to try to eke out my meagre spoons but I find I just have to have a nana nap in the day to have enough spoons to cook dinner.

I am praying that I feel better for Christmas as we are having family here for lunch Christmas Day. Most certainly I will have to be stronger than what I am now. My body is failing fast.

Invisible illnesses hurt as much as a broken arm.

So yesterday I got my tooth seen at the dentist. I was overjoyed that she managed to save it. It was a gruelling 45 minute sit in the chair.

Those of you who suffer from fibromyalgia know that sitting stretched back with one's head tilted to the side is not an easy pose to stay in. Add ankylosing spondylitis and polymyalgia rheumatica to the mix, and it's a half hour of torture.

I must say though that the lady dentist was very patient, kind and efficient. I told her about my many ailments as required for a new patient, and I was amazed that not only did she know what fibromyalgia was, but was very careful to not touch my neck roughly. 

She also gave me double the novacaine because she knew I would be very sensitive to pain.

It so happens that her friend suffers from fibromylgia and she has a really bad time of it. To have the dentist allow me to sit up and have a rest every ten minutes was a blessing. In fact, she was a godsend.

She lowered the chair as far as it would go as I got out, and being aware of my torn knee ligaments in both knees, she helped me get out and stand up. 

Today, my tooth is not aching at all, but my jaw, ear and neck are. I suspect from the injections and keeping my mouth open for so long. I have TMJ as well.

Today I have been doing meals, cleaning my kitchen and folding washing whilst medicating with paracetamol. I have had to take it every 6 hours, but it is what it is. I am still better off filling the tooth as opposed to pulling it.

My plan for tonight's meal is to make a sweet curry pork dish with rice. Chris loves that and it's easy to do in the slow cooker.

My online shop will be coming in an hour or so, and I will put that away. That's it for today.

I loved that the dentist took fibromyalgia seriously. It's not often that it is. When you find someone like that, the validation lifts one's spirits. Thanks goodness some people believe that invisible illnesses hurt as much as a broken arm.

 

It gets tiresome!

Over the last few days, I have had a cancer scare with someone dear to me, and my fibromyalgia has flared and with the pain comes that most embarrassing symptom of all: fibro fog.

I was talking on the phone to my sister, and was telling her something that had happened, but I never got to finish what I was saying. I got distracted mid-sentence and never finished the tale.

Unsure of her knowing of whom I was speaking, I digressed in a discussion on who he was, and when I tried to remember the point of discussion- I simply forgot.

Being that my sister also suffers from fibromyalgia, she understood-otherwise it would have been totally embarrassing. But there have been times in the past when I simply can't think of a word and flounder.

Like the time I was at the doctor's and was telling him something important. I simply forgot a word and there was a pregnant pause as I floundered to find it- embarrassment made it more difficult to find. He just looked over his glasses at me until I ventured to say that my fibro was flaring and this isn't usual for me. I am usually verbose.

Many times during a fibro flare, I can be reading something and it just doesn't sink in. I reread it and reread it before it is clear what I have just read. Or I can be paying the bills and have to check upteen times before I pay it to make sure I have the correct amount and I must check again to whom I am paying said correct amount. 

This coupled with the physical pain and fatigue make for a very challenging life during a fibro flare. It has the propensity to sap you of your self confidence. It can make you doubt your sanity. It can scare you to death as you worry about your competence to even run your own life at times.

I would not wish this on anyone: the pain. the fatigue. the confusion. the sapping of confidence. the insomnia. the judgments.

Many times I cannot attend church or read my Bible and I sense that there are some who think I am backsliding. Far from it. I am simply too exhausted.

All these things are a Fibromite's lot and no one seems to understand if we give in to a rare moment of snappiness or pique. It's just that the whole fibro thing with pain 24/7 gets one over it very quicky and it gets very tiresome! 

Today's to do list:

• Washing
• Clean my kitchen
• Cook chicken risotto for dinner

 

It still is what it is!

You may remember me telling you that I bought a bath chair lift so that I can have a bath. I was so overjoyed when it came.

Unfortunately it didn't work out for me and I only used it twice before I sold it. It came down to awkward plumbing and knees that don't work anymore. 

To say I was disappointed would be an understatement, not only disappointment that I couldn't bathe but also for the fact that it cost me $870AUD.

It was still immaculate and under warranty so I decided to sell it. I did after a couple of weeks, but I sold it for only $400AUD with ebay fees of $53.90 so I didn't make much back on it. 

On the bright side though, I did find that the shower in the main bathroom has an easier accessible shower stall and better water pressure than the ensuite one. 

And speaking of showering, I have purposed to have it at night now due to my spoons being scarce with my latest fibromyalgia flare. It doesn't matter so much if I run out of spoons if I am on my way to bed anyway.

Victoria has been experiencing very wild weather with lots of rain and thunderstorms. The pain in my joints and muscles gets too much to bear at times and I find I am needing to take a Tramadol some days.

 I haven't been spending much time on the computer for this reason as Tramadol makes me feel spaced out and I can't focus to write properly. Like everything to do with fibromyalgia, it's a tough task master and a tyrant, but it is what it is! 

Silly season's begun already!

 

This year because we finally have a larger home, I am hosting Christmas Day lunch. As always, I need to plan and pace myself because of my chronic fatigue, so I am looking into buying my foods and gifts early.

I know I am going to have a fibromyalgia flare by Boxing Day, but it will be worth it to have some good memories. Sometimes you just have to push yourself or you never do anything. I am looking forward to it! But to minimise any major flare after Christmas and leading up to it, I am planning already!

Last weekend our 10 year old granddaughter Taylah came and she loves Christmas and decorating, so we gave her the tree and decorations and told her if she wants, she can decorate it. She wanted to!

So except for Grandpa Chris holding her to place the star, she did it all by herself. We think she did a sterling job!

To be honest, if we weren't hosting lunch this year, we probably wouldn't be bothered with the tree but with family coming, it seemed worth the effort. So the tree is up albeit early. With both of us feeling under the weather, and with a little willing helper, it is cheerful and jolly. And good timing!

Taylah placed the solar lights so that the tree turns on at dusk and turns off at dawn. So there's no upkeep and even though the tree is minimalist by most standards, it still heralds in the festive season.

All we have left to do for decorating is putting the wreath on the front door, but it seems a little too soon to go public yet and let everyone know that at Hicks' House, the silly season's begun already!

Worth every cent!

 

I have enjoyed using my Roomba robotic vacuum so much that I have bought another robotic vacuum that also mops the floors.

Our home has lots of tiles on the floor and it takes a good deal of spoons to keep them clean. These two robotic vacuums saves me on energy and pain.

There's been little energy and a lot of pain these last few weeks. My blood pressure is still high even with me resting more. It's a bit of a puzzle really as emotionally I am good-or as good as someone with constant fibromyalgia pain can be. So I am not stressed.

I am enjoying our new home and it is finally decorated and things unpacked. I have also been decluttering and have given away quite a few things that I found were only taking up space without bringing me joy.

Anyway, I highly recommend all Sacrificial Home Keepers get a robotic vacuum- preferably one that mops as well as vacuums. They are coming down in price but I assure you, they are worth every cent!

Epstein Barr And Fibromyalgia: The Link

Chris and I have both had glandular fever which lasted for months. He is being checked for fibromyalgia as he has every indication that he has, even though it is mainly a female disease, it can affect men. Here is an article written by a doctor about that link....

Epstein Barr, the virus responsible for glandular fever or mononucleosis, has been linked to the development of fibromyalgia – a chronic, painful condition of the muscles and connective tissue.

Fibromyalgia sufferers are mainly female and report chronic widespread pain and a heightened and painful response to gentle touch. One of the most important criteria to determine whether or not you may have this disease is significant pain in very specific areas of your body, including:

* Inside of your elbows
* Your collar bones
* Inside of your knees
* Your hips

Usually these locations are symmetrical, so you’ll have pain equally present on both sides of your body. Experiencing significant pain when someone presses on those areas, on both sides, is indicative of this condition.

Other symptoms can include fatigue, sleep disturbance, anxiety, bowel and bladder problems, difficulty swallowing and joint stiffness.

Conventional medicine offers no cure for fibromyalgia, although there are treatments like medication, exercise and behavioral interventions that can reduce symptoms.

The natural approach to treating fibromyalgia is to re-balance the immune system which may have been damaged by the effects of the Epstein Barr virus. It is also vital to relieve symptoms through nutritional intervention, graded exercise, stress management and re-establishing good sleep patterns. Let’s have a look at some of these natural treatments for fibromyalgia:

The mineral magnesium is a natural muscle relaxant that is showing promising effects on the pain of this condition. It should be taken as a powder or capsule along with magnesium-rich foods like fish, avocado, raw nuts and seeds, soybeans, green leafy vegetables, brown rice, apples, apricots and grapefruit.

Malic acid is also often low in sufferers and should be supplemented. Malic acid is found naturally in fruits like apple. It often gives unripe fruit a tart or sour taste.

To help relieve the fatigue seen in fibro and Epstein Barr, vitamin C and the B complex are recommended. Anti-inflammatory foods like fish oil, zinc, ginger, turmeric, pineapple and paw paw can also help.

Restoration of normal sleep patterns is an essential part of the recovery process. Herbs like valerian, skull cap, hops and chamomile are excellent. Epsom salt baths which are naturally high in magnesium should also be taken nightly before bedtime. These baths reduce muscle pain and tension and help ensure a good night’s sleep. Gentle exercise during the day – either a walk, swim or stretching exercises can also help you sleep better at night.

Diet wise, I recommend my Epstein Barr, CFS and fibromyalgia patients follow a low carb, high protein diet based around good quality protein foods and plenty of fresh leafy greens and other vegetables. Sugar, grains and the nightshade family of foods like tomatoes, eggplant, chilli, potatoes and capsicum, should be eliminated as they can trigger pain and soreness in the fibromyalgia patient. Remember too to drink plenty of pure water – at least 2-3 litres a day.

I have to add here that I could never drink 2-3 litres of water a day and current medical advice is that we only need about 6 glasses. Too much water intake can cause more problems and we have enough to deal with already.

Here a little.

 

So today I woke with no spoons and I felt like I had been hit by a bus. But I really want to start this journey of reclaiming my house, so I bit the bullet and took my first step.

As the kitchen is always the first area that calls for attention, I decided to start there. I had cleaned up last night and only had a few dishes to take out of the dishwasher.All I had to clean up was the breakfast and morning tea dishes.

Fibromyalgia flares see that I simply can't do mornings, and as you can see, I couldn't raise a gallop until nearly lunchtime. All I had managed to do was pull up our beds, put a load of washing in and run my irobot, Sadie.

So by the time I had done the kitchen, it was time for a nana nap as my angina was playing up and I was finding just breathing enough.

So I had a nana nap which lasted a few hours, and I came out again but I still had no spoons to speak of.

My plan was to wipe down the kitchen benches or counter tops and start preparing dinner, but I had to leave it for the moment. Chris made me a cup of tea, we discussed what we would eat tonight and I sat down to talk to you.

I realise most people would say that I haven't accomplished a lot, but believe me, when you wake with no spoons at all, it is a lot. I know the benches need wiping down, but basically the kitchen's clean and I can start on cooking dinner as soon as I recoup.

I don't allow myself to suffer from "false guilt" anymore and I don't allow myself to be dictated to by my OCD perfectionist healthy woman of the past. She doesn't exist anymore. 

Everything we do is kudos to us Sacrificial Home Keepers. We push ourselves to achieve little by the standards of "normals", but to us, we have run a marathon.

So in a minute after I post this post, I will be cooking sweet and sour pork and rice. And then I will pray for enough spoons to see me sort the kitchen out- I hate getting up to a dirty kitchen and if I can do it before bed, it will be a gift from my previous self to my future self.

Tonight is bin night, so I will help Chris gather the rubbish and put the bins out. Come to think of it, they go out more often than we do these days! But it is what it is! With no spoons for both of us, staying home is a pleasure.

Anyway, I have at least achieved something today- working. pacing. resting. planning. It all adds up with here a little, there a little in the daily life of this Australian Sacrificial Home Keeper.

On this new quest

So I am just coming back to life after our move. My fibromyalgia is still there of course and so is my tiredness. I am trying to live with constant angina, but I have a new drive to get my house organised and decluttered.

All our boxes are unpacked and stuff is in its place, but there's a need to sort through that stuff and cull it.

Added to that is the desire to keep our new home nice. So I have my hands full, but no spoons.

I am trying to take control of my home- or rather, keep it controlled, but it's going to be a spasmodic deal. It all depends on spoons.

Like I did at the previous house, I have enlisted the help of a cleaner once a fortnight. She changes our beds, cleans the bathrooms and toilets and vacuums and mops the floors.

It sounds like that would be enough, but it still needs cleaning between visits. Thank goodness for my irobot Roomba.  It does a great job in between and I run it twice a day. We've called it Sadie!

To be honest, even without those jobs that the cleaner does, it. is. more. than. enough!

I am going to post pictures of my journey to claim back my house. Mainly for my own records, but you can join me here if you like.

I am going to try my best on this new quest.

 

Having patience with yourself

  

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.

It's a pain!

 

So the day has started off without any appreciable spoons. However, I have purposed to do some chores in the house regardless. Simply because they have to be done.

With the last two days slack on housework, there are dishes and washing and some other chores that are shouting to be done.

My sugars are still 10.4 this morning in spite of taking the new diabetes medications for a week. So I accept that I am never going to feel really well. Fibromyalgia and angina coupled with back pain also seem to do that. 

So I am going to just concentrate today on the most crucial homemaking tasks: having clean dishes and cups and some clean clothes and towels.. No lists today, this is all I can manage.

So today's list of to do's are:

1. Soak and wash dishes and put away after air drying
2. Catch up on the washing and put it away after the dryer has finished
3. Cook some lamb stew in the slow cooker for dinner

Granted it's not much to do, but my body feels like it's trying to climb Mt Everest. But enough procrastination: I must push on. No fairy godmother is coming- I'm it!  

It's mundane. It's frustrating. It's tiring! But it is what it is!  It's chronic illness! And it's a pain!

Cats have never been very considerate

This morning I hit the floor running. Xena woke me with imminent chucks and I shooed her off my bed, but not before she soiled both my minkie blankets. 

She also soiled the carpet in my bedroom. I have the blankets in the wash as we speak. The carpets have been cleaned and sprayed with Glen 20. 

I love her dearly, but often tell myself there will be no more cats when she passes. She's 12 now. We will have to wait and see on that one!  

So far since that, I have folded and put away 3 loads of clean washing, made lunch and cleaned my kitchen.

Tonight I am doing frozen dinners as we had a big lunch. Apart from that, I will be resting as my fibromyalgia is still flaring.

Now Xena is peacefully sleeping in her igloo. It would have been so much more Mummy friendly to have sicked up in that. A simple matter of washing out a little mattress. Still, cats have never been very considerate have they?

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. 

Of apples and rosy cheeks

This weekend we had our 10 year old granddaughter, Taylah come and stay with us. We had a lot of fun and part of that fun was making apple roses.

My fibromyalgia was really bad and I explained my need for a nana nap by relating the meaning behind the spoons. She totally understood and in fact told me to go have a nap and she would call me in half an hour.

True to her word, she woke me in half an hour, but my body whimpered and said, "No way!" However, because we had made a "pinky promise" and I wanted to keep it, I dragged myself out of bed.

We stayed up until 11 on Saturday night because it wasn't a school night, and we slept until midday. I couldn't believe that I had slept that long. Tay must have needed it too.

We baked  apple roses and kept some aside for when her mum and sister came to pick her up. It was the first time they had seen our new house. I rarely see them these days. 

I was happy that we had made more memories when I said goodbye to them and so was my little Tay, looking lovely and rosy cheeked, clutching a few more apple roses for them to enjoy later.

Between my nana naps!

 

Today is Saturday morning here. I have had a busy week with doctors appointments and physio for my daughter who is doing really well. 

My son had a possible cancer in his bowels, but the first test was a false alarm and to be honest, it made me anxious. I didn't realise how anxious until he was cleared. 

This son was born with a forceps injury to his eye- it looks normal but he has very little sight in it. He has developed a pterygium or sun damage in his good eye and has surgery next Friday to remove the growth because it is growing across his eye and may interfere with his vision. I will be glad when it's done and his eye has recovered. 

All this has given me the Mother of all Flares. My fibromyalgia is killing me at the moment and I am taking frequent naps to cope with it. I have a few housework chores to do and some folding up of clean washing. I will do it- in between my nana naps!