A nasty dictator

 

Yesterday was a very busy day and I am feeling the after effects now. My fibromyalgia is flaring and the pain is incredible. 

Dianne my daughter was not able to get the staples out from her total knee replacement because the doctors and nurse said a week out of surgery is too early to remove them- especially on a bending joint. We had to reschedule to next Thursday. 

Then I was not allowed to accompany her into physio because I am not vaxxed against covid. So I helped her return her hired crutches-(she has her own) and left. 

I accompanied her teen son into his counselling appointment, talked to the psychologist as he is a new patient, then left them to discuss things. 

It was so much walking and in and out of cars that my own knees were quivering. Di's pain level was off the charts as it is difficult to get in and out of our car- it is high. She begged me to not undergo knee surgery myself. (I have both knees with torn ligaments) She didn't have to beg much. I don't like pain.

Today I am just resting and making a stew in my slow cooker. That's the best I can do today. Fibromyalgia is a wicked task master and a nasty dictator. 

Stating your name and business

As you know, we have just moved and along with a new home, comes some new things to add to the decor.

Chris and I love this door mat. This verse is one of our favourites and when we saw it we wanted it. It can be personalised to add your family name.

It looks lovely at the front door. We still have pictures to be hung and some flat packs of furniture to make up. The unpacking itself is almost finished.

The plan is to gradually go through room to room and gradually declutter. But this will depend on my spoons. I have another fibromyalgia flare.

But we have been finding that even a concerted effort of 5 minutes at a time followed by a rest and a cup of tea has paid off. Pacing is critical with fibromyalgia and heart failure.

I am in the process of getting an i-Roomba robotic vacuum cleaner to help with the floors. This house is quite large and the passage alone is as long as a cricket pitch...

Neither Chris or I can vacuum these days and I am hoping that the i-Roomba will save on money to employ a helper to come clean the house for me. I will let you know how we go.

Happily, the robotic vac can manage both tiles and carpet without skipping a beat, so it will be able to keep our lovely door mat free of dust bunnies. 

Meant to be noticed, I don't want visitors to our home seeing the mat dirty- not when it's proclaiming our faith and intention of having a holy home. It's all about stating your name and business! 

We love our new house

 

I pushed myself today to do some work and unpack. I know it's not the best thing I can do with a fibromyalgia flare, but I need to get my home organised. We are about two-thirds unpacked. 

But of course the cooking, cleaning, dishes and washing have to be kept up and I managed to get the kitchen cleaned and a load of washing done. 

My daughter Dianne came home from hospital after her knee replacement. She's doing really well, praise God. 

Chris isn't feeling too great so I have to wait for the heavier things to be unpacked. We really like our new house.

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.

 

Out of my comfort zone.

I am so exhausted right now. We have just moved house and as expected, I have welcomed a new fibromyalgia flare.

Having fibromyalgia for 23 years, I knew it would end like this, but in life some things are unavoidable and you just have to go with it.

So I sit here writing to you, trying to wind down enough to actually fall asleep. I have succeeded in making the home functional but there's much to still be done.

It will have to wait until tomorrow. As long as I have clean clothes for tomorrow and some clean cups and plates, it will have to suffice.

I hate moving so much, but I do love the house we have moved to and I am hoping the next tenants feed the birds and stray feral cat who comes to dine. I will miss them.

Wednesday I need to go to our doctor, so we will hand the keys in to the real estate then. Then they can inspect it and show prospective tenants through.

It looked lovely after the cleaners had been yesterday and the carpet cleaner's spray was perfumed so nicely. It was hard work for me to get to this point, but as I said, it was necessary. 

I cleaned and packed like a pro and we expect to get our bond or security money back with no problems. My muscles are so weak now but I think the results of my effort should pay off even though I was out of my comfort zone. 

 

On the move again!

We have been busy looking for another home to rent. It's been a nightmare. There aren't many homes to rent and when we apply, we are vying with about 20 other people for the same home.

Most days we have to go to look at these houses and as we are in the country, it is at least an hour's drive each day. I am exhausted.

So much exhaustion is hard to take, especially when it brings on a fibromyalgia flare. But as in lots of things in life, it just has to be done.

I think the most stressful part is actually securing a property to move in to. The actual move is not so bad, and this time we will be paying my grandson to help us move.

With the fifth wheel and tow vehicle sold, we are in a position to get someone to do the move for us and it's especially important with our failing health to enlist help this time.

We are going to miss the birdlife here for sure, but with us being in our 70's, we have decided that we need to be closer to family and hospitals if we have an emergency.

This house is old and has no insulation and is incredibly cold and it's our winter now. With the price of electricity going up on July first, we won't be able to afford the heating in our all electric dwelling.

We are feeling the cold and are looking forward to ducted heating again.

Today there's no house viewings as it's Saturday. I have used the time to catch up on washing and I have two slow cookers going with different meals in them.

I am contemplating using Prednisolone for a few days so that my neck and jaw pain (TMJ) abates. I don't know if it will help my muscle pain in my shoulder and upper pain, but it can't hurt.

Today is the first day for awhile that I have been able to post as my muscles feel like they're tearing. But I just wanted to touch base and tell you what's happening in our part of the world at the moment.

Next week is another day of house hunting and tonight I feel like I am running on a wing and a prayer- on the move again!

 

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. 

 

He's feeling fairly ordinary.

It's been a busy day today. I have a broken off tooth that needs to come out. We had to be at the dentist's by 8.30am and it was an hour long drive. I was being fitted in as an emergency and was warned I could be waiting for up to 2 hours to get seen. 

Two hours passed by waiting and I was then told they couldn't see me today. They gave me a list of dentists I could see but it was too late to be seen today. 

So we drove about an hour away to see a house that we have applied for to rent. It's so nice and the inspection is tomorrow afternoon at 5pm. I hope we are successful. We have told the landlord we are looking and he was fine. 

When I got home I rang a few dentists on the list and I have an appointment midday Thursday for an extraction. My tongue is sore as the tooth is quite sharp. With my fibro flaring and TMJ, I am just about out of my tree with pain. 

My twin sister and my son have Covid and continue to feel sick, but she's feeling a little better, but my son has man flu. I am so glad Chris and I haven't got it....

I am already in my PJ's with my electric blanket on.  I have rung my son to see how he is before I go to bed.  Not so good. He's feeling fairly ordinary. 

 

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!

Chipping away at the stone

So my fibromyalgia is back with a passion, making every muscle ache. I tried to take a bath a couple of days ago and I had great difficulty getting out. I had to use a pillow under my knee and I had no other option than to lean on it to get up. It was so painful and the consequences are enormous.

I know I shouldn't have tried with both knees with torn menisci and other ligament damage.  I was in so much pain that I longed for a bath to hopefully relax my muscles. It didn't. Nor did it help my sore neck with another episode of polymyalgia rheumatica.

This constant pain is wearing me down. My doctor is too afraid to give me pain relief and I am considering changing doctors. This creates anxiety in me. And to top it all off, I have been cranky and not really a nice person to be near at the moment.

With Chris ill himself, I seem to be carrying everything myself with no help in sight. Take this morning for example. I put on a load of washing, cleaned Xena's litter tray and unloaded and loaded the dishwasher.

Testing our blood sugar level before breakfast,  I asked Chris what he wanted for breakfast. He told me what he wanted, just sitting there waiting for me to get it for him. I am sorry to report that I arced up and told him to get it himself.

I added some other truths about him acting like he's the only one with pain and that I am tired of being his servant when all he does is watch TV and sleep all day. You gotta understand, that usually this isn't an issue, but the pain has truly worn me down.

Chris asked me what I had done so far this morning. I told him and he replied that it isn't necessary to push myself like I am doing. Push myself? Doing minimum household chores?

I told him I was just trying to live a normal life and he replied, "But you aren't normal! You have got to realise that and accept it!" But in fact, what I do is pared down to the bone housekeeping compared to what it was even 10 years ago. How much less can I do and still manage to live a relatively clean and organised life? Single handedly.

Over the 23 years of having fibromyalgia I have had a determination like stone. I would not let fibromyalgia or indeed any of my other painful conditions control my life. And for the most part it hasn't. Until today. It's chipping away at the stone.

We have gone mad!

It may seem strange to some, but even in the worst pain, you will find me playing Candy Crush in an effort to distract my mind from the pain.

The rheumatologist suggested to my daughter who suffers from fibromyalgia and pain post chemo, to use it as a distraction from the pain. She was one of these mind over matters kind of doctors. We were not very optimistic to be honest.

As a sufferer of not only fibromyalgia but ankylosing spondylitis, spinal canal stenosis coupled with bad arthitis and angina, I thought it may help me. It helps a little. But Tramadol would be better!

My doctor won't let me have them. Even though he knows I only take them as required for high pain days like today.   He gave it to me when my second knee tore and it helped my fibro pain so much. Then he closed shop!  

I  know there have  been many who abused pain-killers but when  basic pain relief is available only with a chemist's approval such as Panadol with codeine, it makes life more difficult for the person like myself,  to get any relief at all. 

With fibro flaring and another episode of polymyalgia rheumatica, I have been tempted to take some of my Prednisolone, but I am worried about the side effects. I tell you truly, I am feeling desperate.

So even though you may see me playing Candy Crush or online a lot, I can honestly say that it's for  medicinal purposes. I will be a Candy Crush addict any day if it will relieve the pain.

Just don't tell the do-gooders. If they think we are liable to become addicts, they'll make FB take it off their site! You fellow pain sufferers know they will. We have gone mad in our correctness!

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! 

 

It is enough

Today  is  Resurrection Sunday  here.  Chris and I took  communion  with  my son  and sister via facetime this morning.  

None of us is able to get to church right now, but we had a very moving and worshipful service at home. 

He is risen! Happy Easter Sunday to those who celebrate!

I am short on spoons due to fibromyalgia flaring so I will just be doing a load of washing and cooking meals today. It is enough! 

 

Another day at the beach

So we were watching the birds coming down for the seed and bread and I grabbed my phone and did a short video.

As you can see, the beautiful coloured small parrots came down in droves, making it a lovely afternoon at The Beach aka the couch.

With pacing and resting during fibromyalgia flares, I find the beauty of nature helps to lift my spirits and give me some peace.

I thought if I shared it, it might brighten your day. By the way, although the sound's not great, could you hear Xena crying "Mum!"? She badly wanted me to allow her to go outside.

I couldn't risk it as she would most likely attack the birds or at the least, frighten them. We don't want anything to jeophardise the possibility of another day at The Beach! 

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. 

 

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.

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! 

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.