Or should I say, how little!

It's Wednesday morning here. I have cleaned my kitchen and taken meat out to thaw for dinner. I am going to cook pork chops with mashed potato and greens with gravy.

My sister's son came to visit her for Mother's Day. He brought some homemade scones with cream and jam for her and my nephew to enjoy. They share a house together.

During the visit, he shared that his own son is at home with Covid. Yesterday, he rings and says he's now positive too. With lupus, fibro and other diseases, and with my son with breathing problems, they are worried that they will catch it too. They aren't vaxxed. So far my son and my sister are OK but are getting some RAT's this afternoon. 

Chris is sleeping sitting up on the couch. He really needs to go back to the doctor as he's feeling like he's drowning in fluid. I have been encouraging him to go, but he's very stubborn. Consequently, he doesn't get much sleep and can't lie down. 

It's hard looking after him because of this fear of doctors and hospitals. It's not like he's a child and you just take them....

There's not much else planned for today. My fibromyalgia pain is bad. I'm so glad at this stage of my life that I can decide how much I will do each day. Or should I say, how little!  

It was a good day!

It's Monday afternoon here. I have cleaned my kitchen and done a load of washing. My step-son and his wife came and checked out the fifth wheeler we have sold. We can't even get up in it anymore.

She made the bed up again like in the photos and step-son vaccuumed the floor. It is so nice and the buyer is going to be getting a bargain. He plans to use it as a static van to live in on his property. He's been on the phone organising a transport company to get it for him. He's interstate. 

Hopefully, it will be gone by the end of the week and our bank account will look a lot healthier. Next we will be selling the tow vehicle and buying a new car and moving. So that's what I am doing this afternoon: looking at home rentals. 

I am cooking pork BBQ ribs for dinner. Yet with only a few things on my list of things to do, I am incredibly tired..thanks to fibromyalgia.

Yesterday was Mother's Day and Chris brought me a cup of tea this morning and said Happy Mother's Day. I said I aren't your mum and he replied but you mother me!  So cute. I giggled.

Each of my kids rang me so all in all, it was a good day! 

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!"

You just have to flex with fibro

 All of us who suffer with fibromyalgia know that it's a very unpredictable illness. We just can't plan with it as we don't know how we will feel until we wake up- and even then it's unpredictable.

We can start our day with extreme stiffness and pain, yet can come better by mid morning some days. It makes planning our day difficult to say the least.

I can't count the number of times I have had to apologise to someone for not being able to socialise or go shopping. I felt well at the time of arranging or accepting the invite, but fibro had other plans and held my body hostage.

Countless times I have planned to declutter my house or some other chore, and I have even gotten started only to find that my body was yelling at me, "Seriously??" and I had to stop. 

It is very challenging and even depressing. But it is what it is. Fibromyalgia is a pain in so many ways!

Lately, I have learned to say to people that I would love to come/do something but because of my fibromyalgia, I won't really know until the day how I will feel. So I will say a tentative yes and hope to be there/see you! 

I have had to learn to not be dogmatic about when I will do a certain chore. For example, all my life as a homemaker, I have changed my sheets every Monday. But with the coming of chronic illness, I might not feel well enough to do it that day. I have just had to accept it.

Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.

I have learned the hard way too that it's no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It's not the end of the world, and you just have to flex with fibro...

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!

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.

On my cactus sofa

We all like to find a comfortable place to sit or lie down. You know, somewhere to put one's feet up and just relax. But I am finding with my fibromyalgia flaring and my spinal problems that this is not easy.

No matter where I sit or however comfortable a chair looks, it's usually uncomfortable. Take for instance the new computer chair I recently bought to solve that problem.

It looked so suitable on the website and I was certain it would do the trick, but when it was finally assembled, it was not comfortable and it seemed to aggravate my lumbar region, making my legs go numb.

As far as furnishings go, the chair wasn't cheap and like so many things I have bought to relieve pain, it is not being used.

The lounge suite with recliner ends can't be used either. The recliners are so hard to get in and out of. Thanks to fibromyalgia giving me muscles the size of sparrows' knee caps, I cannot operate the side lever to bring the recliner footrest out.

If Chris helps me with that, I also cannot get out. I have no muscle power in my legs, thanks to fibro again, torn knees, and spinal problems. The only good thing it's for is to lay on.

And speaking of laying- even my bed is hard to get comfortable in. With muscle pain at an excruciating crescendo by the end of the day, no matter how I lay, it feels like I am trying to sleep on a concrete slab!

I only have panadol osteo for pain relief as my doctor is very hesitant to give me any and I will not take Valium as a muscle relaxant. I was addicted to it for years as it was the first thing they gave me in hospital for my many weeks of traction for my Schuermann's Disease.

Fibromyalgia is a pig of a disease/syndrome. It rules my life and leaves me nowhere to turn off and seek some comfort. When you couple that with another malady such as my ankylosing spondylitis, it drives one over the edge emotionally.

As someone in need of some pain relief and her doctor too afraid to order it, I am seriously considering changing doctors. Until that happens, you will find me lying on my cactus sofa.

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!