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. 

 

Get on the Ark and get saved now.

Scripture tells us that we will not know the day or hour that Jesus comes to take His Bride- the Church home with Him. We who are looking for His glorious appearing and being with Christ for eternity are longing for the Day. And so we should be.

“However, no one knows the day or hour when these things will happen, not even the angels in heaven or the Son himself. Only the Father knows"  Matthew 24:36

Many of us are experiencing our own tribulations as the world is cast into the shadow of the great Tribulation, and we are tired of living in this sin-filled, ungodly world. We need to keep not only our eyes looking up, but our hearts. 

As in the days of Noah, so shall it be in the final days before the Rapture also known in the Bible as the Harpazo and  Rapturo. (Yes it is mentioned in the scriptures). We need to keep the faith, keep fighting the good fight and keep our spirits and heart in longing for our Beloved to come for us. And He is coming! 

What can we be doing as we wait for Jesus to take us Home?

• I believe we should be in prayer for those people suffering under authorities such as the Taliban and for all those Christians who are in danger. 
• We need to intercede for the Ukrainians who are being invaded as we speak.

• We should be praying for those who are still unsaved. 

• Keeping the faith can be difficult for some, especially as the world gets darker. We need to pray for ourselves too.

How can we overcome the anxiety and depression these end days bring?

• We should bring our thoughts and minds under the control of the Holy Spirit by focussing on good things that are still here

• We must remember that Christ is in control, no matter how bad a situation becomes.

• We must bring everything we see, hear and read in to the light of the Word and we must remember that all these things, though disturbing, are temporary.

• We must maintain an attitude of gratitude for all things in our life and dwell on God's goodness.

• We simply must be a person of worship and praise.

• We must be in the Word.
• We must remember that Jesus has promised to take us Home before the Great Tribulation.  Because you have kept My command to persevere, I also will keep you from the hour of trial which shall come upon the whole world, to test those who dwell on the earth- Revelation 3:10

The end is in sight and we are tired. We long for Jesus to take us to be with Him. We are continuing to fight the good fight. We are running the race and our Saviour cheers us on. 

We are being His faithful servants even in the end days.. whilst watching and waiting. Even so, come Lord Jesus! Maranatha! There's not much time left, my friends. Get on the Ark and get saved now.

 

 

And a good sleep

So recently we have been told that we are low on magnesium and have been taking magnesium tablets. It is about 10 days now that we have taken them and although my muscles still pain me, both Chris and I have had less calf cramps.

I have noticed a deeper sleep for myself, though Chris still has trouble but also reports a more refreshing sleep when he manages to drop off. He has noticed that he has less restless leg at night. Any help is a blessing.

As a sufferer of fibromyalgia, I welcome anything that helps me hurt less and sleep better. As it's early days of taking the supplement, I live in hope that it will get even better in its' relaxing effects.

I know it is improving my sleep already because I usually cannot get back to sleep if I wake up early and it's getting light. But today, I woke up to the grey dawn and decided to try going back to bed after going to the bathroom. I managed to sleep until 9.50am. 

I was amazed by this, but had to have an inward chuckle as today was the day my cleaning lady comes at 10.30 and I hadn't done anything. I still needed to get dressed, take our bloods, give Chris his insulin injection, feed Xena and then feed us.

Usually I pick up any dirty clothes up off chairs in our rooms, stack the dishwasher, and empty rubbish from the mini rubbish bins around the house, plus check Xena's tray is clean before she comes. I don't want her wasting her time on stuff I can do- I want her to focus on what I can't do like washing the floors and cleaning the bathroom.

But today, I managed to tidy up so that the cleaner could just clean- but we still were eating breakfast when she arrived. So because we were late through sleeping in, she was surprised to see us still at the island bench, eating. 

It all worked out well and I am hoping that the magnesium's effect continues. Even if it's ten pills a morning now for us both to take. As long as they make our bodies think we are healthier than we are, it's all for a good cause. And a good sleep.