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! 

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 very 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

 

We give You thanks

"We Give You Thanks"

Lord, as we gather at this table
May we be truly grateful
For the bounty You have given us.
We thank you for the earth and rain,
The good harvest and the wholesome grain
That went into our daily bread
And kept the stock that kept us fed.
Thank you for the hands that cooked and baked,
And for the water that our thirst slaked.
Please accept our thanks as we honour You
For Your goodness in giving us this food.

© Glenys Robyn Hicks

By him therefore let us offer the sacrifice of praise to God continually, that is, the fruit of [our] lips giving thanks to his name. Hebrews 13:15

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! 

Right where she loves to be!

Our white cat, Xena loves being near me. She always follows me around and sleeps with me as well. I guess she's her mother's girl.

She can be a bit jealous though. When Chris comes in to say goodnight and tuck me in and he always gets greeted with "nooooo!" from her. Especially when he kisses me. For that, she always gets up and comes to me, rubbing my hand or licking it.

Whenever we sit on the couch watching TV together, Xena jumps up and wiggles her way between us. We find it endearing and amusing.

Recently we got a new desk for my study nook and there's plenty of room for her favourite daytime sleep- her igloo. So knowing how close she loves to be- usually lying over my keyboard as I try to type- I put her igloo up on the desk in the corner, very close to me. She loves it!

We both love this house and feel really nurtured here. And so does Xena- and why not?- she's right where she loves to be! 

Giving the gift of time well spent

 

As most of you who follow my blogs know, Chris and I not enjoying the best of health. We both are currently battling heart failure, diabetes and obesity brought on by the inactivity that comes with pain and age.

Gradually as the maladies make themselves more known and felt, we are aware that we probably won't make it to our 80th year.

Lately we have written a will and talked to our adult children of our final wishes. Unable to bear being apart, we have decided that we both want to be buried together, and to this end, we are currently getting information about prepaid funerals and plots of land at our local cemetery.

We have discussed Do not rescusitate orders and made our wishes known to our children. They were hesitant to talk about these matters, but we assured them that we need to sort it out, afterwhich we won't talk about it.

My stents in my heart are 15 years old and I am told I need new ones inserted, but I have refused  them as the previous 2 angiograms injured me. I simply don't want to have more surgery.  

Chris and I have made the choice that there won't be any more harmful surgeries. If I have a bad heart attack I do not want to be rescusitated.

I am ready for Jesus to either take me in the Rapture or call me Home. Either way is OK. I'm just passing through!

Chris is in really bad health with his own heart failure. I am aware of how little time we may have and I don't want to waste it.

So I am on the computer about an hour instead of all day. I have culled most groups etc but have not culled my friends.

Chris promised me he will update if I go Home. We just cant bear any more hospitals and tests etc- especially when they have done me harm in the past.

I am trusting the LORD instead of man and for the one who is left behind, we are giving the gift of time well spent.

© Glenys Robyn Hicks

Precious in the sight of the LORD is the death of his saints. Psalm 116:15

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!

It's coming together!

 

As I told you, I have been trying to get my home back after our move, and so I have also been decluttering. I have given away quite a few things that I found were only taking up space without bringing me joy.

It was hard to give away some things that were my mother's but I bit the bullet and did it. The recipient was so happy that it made me feel good to have been able to bless her!

I put into action Sarah's organic cleaning and threw out those clothes I don't like or fit in to any more, as I hung up clean clothes that had been sitting around for too long! I bought some storage boxes and put sorted underwear and night clothes in them.

That did create some dust but I didn't worry as I have a robotic vacuum. I highly recommend to all Sacrificial Home Keepers that they 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!

Small steps for sure, especially for those who are healthy, but climbing a mountain to us chronically ill. I am inordinately pleased with what I have accomplished so far! It's coming together, here a little, there a little!

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!

I am beyond tired!

 

After a good day yesterday, I ended up flat on my back. Actually that is in bed. My doctor said my BP was too high at 187/87 and he put me on more meds. I planned to do some organising of my wardrobe but it was not to be.

Half an hour after taking my BP medication, I found I couldn't keep my eyes open, so I went to bed. Woke up a couple of hours later just in time to cook dinner. Dinner wasn't very exciting- a steak sandwich.

Tonight I had to take my usual dose of BP tablets and I am just about to go to bed. It's so frustrating! But with chronic illness, it is what it is!

I have to go back to him in two weeks. He is going to discuss giving me Endep for my fibromyalgia pain.

Unable to sit for long, I have culled a lot of FB groups and deleted my Twitter account. I want to reserve whatever spoons I have to look after Chris and our home. I need to spend more time with him and not on the computer.

This dance with chronic illness has it lead all the way. It steps on your toes and cramps your style. It holds you captive. I just want a break from it. I am beyond tired! 

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.

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!

Planning 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.

Currently I am investigating if I can freeze a joint of ham and one of pork. Also, what type of ham is the nicest to buy?

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!

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?

Of rosy cheeks and apple roses

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! 

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! 

Bushed but satisfied.

Today we have no physio or doctor appointments so we can stay home. I am ploughing through 3 loads of washing and I have to clean my kitchen. 

I am cooking a pork stew in the slow cooker. Chris is feeling unwell and is sleeping a lot. I would be if I could with my fibromyalgia flaring, but I am waiting for the cleaner to come.

I have finally found a cleaner who can fit both DD Dianne and my homes in for a clean once a fortnight. They are doing hers at 2pm and ours at 4pm today. 

Although my Roomba is doing a great job, it needs someone to get into the corners it misses so I will ask the cleaner to do that. Basically it's my floors and bathrooms that need cleaning today with the beds changed starting next Wednesday week. 

We only have Chris's "man cave" to sort out now- the rest is done and the place looks nice. We are totally bushed, but it a satisfying feeling to look around and see it all come together.