"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! 

 

To eat the meat

With Good Friday being on us, often the question of whether or not to serve red meat comes up. Basically the tradition is something the Catholic church adopted and the protestant churches followed... 

Because I have found nothing in scripture forbidding us to eat red meat on Good Friday- or even on Fridays for Christians, I have no problem whatsoever eating it. In fact, when I was worshiping at a Pentecostal church, they held a BBQ after the Good Friday service. 

The  answer  for our house is yes we eat it on Good Friday-  however,  if someone is with us who has a problem with that, we abstain for their sake. Scriptures don't tell us not to eat red meat on Good Friday, but  they  do tell  us  to  respect  the conscience and belief  of  those  who don't wish to.   I  believe like everything in the Christian life, it comes down to loving your neighbour and fellow man. 

This year because my son is living with us and because he upholds the traditions of his childhood when his  (non-practicing)  Catholic Italian  father  didn't eat it,  we will be having fish for lunch.  

If  my  fibromyalgia  flare goes,  our family  evening  BBQ for  Easter is  going to be at  my daughters'  home and eating fish,   because her husband upholds the traditions of the Catholic church. They do not eat red meats on Good Friday. 

I believe we are to respect other peoples' conscience in our decision whether we serve red meats to them. It is the loving thing to do.. Have a blessed Easter!  

 

If any of them that believe not bid you [to a feast], and ye be disposed to go; whatsoever is set before you, eat, asking no question for conscience sake. But if any man say unto you, This is offered in sacrifice unto idols, eat not for his sake that shewed it, and for conscience sake: for the earth [is] the Lord's, and the fulness thereof: Conscience, I say, not thine own, but of the other: for why is my liberty judged of another [man's] conscience? For if I by grace be a partaker, why am I evil spoken of for that for which I give thanks? Whether therefore ye eat, or drink, or whatsoever ye do, do all to the glory of God.  1 Corinthians 10: 27-31

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.