Tuesday, 22 September 2020

We only live once

 The Victorian Government has lifted some of the travelling bans here and so we decided to go for a long drive today. We were so glad to be able to go visit our daughter who also lives in Gippsland. 

We were overjoyed to see a double rainbow on our way home. It was so vivid and we felt like we were actually driving through it. 

Yesterday was a day of severe fibromyalgia pain, but I decided to try to focus on positives and I didn't have to look far. The same daughter we visited today has had leukaemia and she had a phone consult yesterday from her haemotologist, who informed her that she was still in remission.  

Laying in bed last night, I tried to ignore the aching muscles, stiff neck and back and I decided to dwell on the many ways I have been blessed daily. Certainly the blood results were praiseworthy. I fell asleep praising and thanking God for the miracle of her life. 

I woke up still in pain, as the weather was inclement, but I needed to go to the chemist, so I forced myself to get dressed and go. We then proceeded to see our daughter, glad to be able to at last visit someone and drive in the car! 

I know I will most likely wake up in pain tomorrow, but I weighed it up and decided that seeing my girl and going for a drive would be worth it. So I will plan the next few days accordingly.

I will be preparing an easy stew in the slow cooker tomorrow.  I will be doing just the essentials in the house- for me that is putting clean washing away and doing tonight's dishes. With my arms tingling and feeling like my muscles and tendons are tearing, I won't be doing them tonight. They will be there in the morning...

Life with fibromyalgia is a juggling act and a life of constantly meting out spoons and rest breaks. Every day one has to decide if a certain activity is worth the pain to follow it. Sometimes it is.

We have to weigh up the satisfaction and pleasure of today against the certain knowledge of a painful tomorrow. We often have to choose to live and we suffer physically for it.

Fibromites have to plan to live or we will die inside through boredom, loneliness and regret. We must know that we could cocoon ourselves today only to find we suffer tomorrow anyway.

Along with the pain of overprotecting ourselves, comes the feeling of regret. Choose carefully and try to find joy every day. We only live once.

Friday, 18 September 2020

I would pop my cork!

These days when I cook or bake, I try to keep it simple so that there's no big mess to clean up afterwards.

When my granddaughter comes to stay, we often bake but I am checking on messes all the time. We still have fun!

I used to be able to turn a blind eye to messes that children made- cooking, baking and making cubby houses for them. But now with fibromyalgia vying with heart and back problems, I find my patience wearing a bit thin and my spoons non existent. 

Don't get me wrong: I love having my grandchild visit... it's just understood now that any messes have to be cleaned up immediately and things picked up and put away. Nana can't do it anymore!

In spite of how it sounds, we still have fun and in case a nana nap's needed, I just talk to her and go to bed. She's  now of an age where she doesn't need constant supervision- except in my kitchen that is! 

You know how old Mrs Hubbard went to the cupboard and found it empty? well, that's me looking for patience and spoons -to find none there!  My cupboard is bare.  Delightful as the picture here is, I think if I found my kitchen in this mess, I would pop my cork! 

Tuesday, 15 September 2020

Pain changes people

In dealing with my fibromyalgia flares, I find dealing with the accompanying mental pain is just as bad as dealing with unrelenting physical pain. It is just as difficult to bear.

Usually a mild mannered person, after coping all day with searing pain in my muscles, topped off with an inability to sleep soundly, I can fly off the handle occasionally.

Yesterday for example, I managed to catch up on my dishes, which turned out to be a three part marathon. Usually Chris puts them away but yesterday it didn't happen.

My fingers were paining me, my back ached and my legs didn't feel like they could hold me up. Unfortunately, a feeling of resentment overtook me, and I yelled at Chris for not doing his part.

I love being a wife and homemaker, but when everything is hurting at once, and not sleeping well because of the pain, resentment rose up in me. 

Resentment that I wasn't getting any help coupled with no pain relief and tiredness made me verbally buck and shy like a wild stallion. Along with resentment of my lack of help came resentment that my body has let me down.

Once resentment kicks in, it opens the door to self-pity and depression. I don't like yelling at Chris, particularly as he is usually not only helpful but emotionally nurturing and supportive.

I have found that at times like this, when pain causes me to blow my stack, that like an overtired toddler, I need to rest. So I put myself to bed for a nana nap.

Fibromyalgia pain never lets up, even in our sleep. It pursues us in our rest and deprives us of even the enjoyment of a brief period of respite in sleep. We toss and turn, trying to get comfortable- and that is even during the brief time our dry aching eyes are actually closed. It is not restorative at all.

I have had to learn to stop feeling false guilt for reacting to my pain when the levels are high enough to launch a rocket. That's how I feel during a flare. But I have got to remember that I didn't ask for this and am not responsible for succumbing to this painful syndrome.

I must remember that fibromyalgia pain-or indeed any pain, makes the vicissitudes of life that much harder to bear. Everything is exaggerated both physically and mentally, and the only thing I can do is accept that this is not my usual self, for pain changes people.


Wednesday, 9 September 2020

Other species family

Chris and I love animals and if we had our way, our home would be full of dogs and cats. Unfortunately for us, our landlord doesn't want pets in his property and we almost missed out on this lovely house because we refused to give our rescue cat, Xena up and rehouse her.

We really fell in love with our house here, but the thought of losing Xena was too much to bear, and when I took the phone call from the real estate agent telling us they didn't want a cat, and would lease the house to us if we rehoused her, I embarrassingly started to cry. We told them we couldn't do that.

Anyone with a chronic illness will tell you that animals are good therapy and can help reduce pain and anxiety. They are very intuitive and seem to know when you just need a paw to hold or a head to pat or stroke. Xena will actually come up and rub herself on me when she knows I am in pain. Which, with fibromyalgia, is a lot of times..

It was embarrassing when I took that call in the freezer section of Aldi. But the property manager who was putting us forward as prospective tenants was very understanding. Turns out, she was a cat owner as well... 

We actually gave up our house which we really really wanted, for Xena. But in the end, the owners agreed to our renting the house with a cat. We were overjoyed.

To give up our little cat would be something we couldn't do to her. She was as I said, a rescue cat who had been caught as a feral and impounded and who had suffered at the hands of people who obviously didn't like cats.

It took us quite a few months to assure her that she was safe with us and it was nearly a year before she stopped running to hide if we walked too fast near her. We suspect she was kicked with workboots by some males, because she had a fear of feet and males.

But love won out, and 7 years later, she is the most loving little cat who loves nothing better than to sleep between her mum and dad. She trusts us and is part of our family now.

I know I speak for millions of cat and dog owners who love their furbabies to bits. There's no need to make a defence that these little creatures transcend the pets only genre and become other species family.

When I am resting, I know that as soon as Xena realises I am either in bed or asleep on the couch, that she will be jumping up carefully (so as not to disturb me), and snuggling up to me as I sleep. 

Chris and I call our bed the family bed because the whole family sleep in it. Pets are our other species family, and we wouldn't have it any other way.

Saturday, 5 September 2020

Spring has sprung

I let Xena out this morning and was greeted by a lovely warm day with cherry blossoms on the tree in our neighbour's back yard.

Xena ran to the plastic box of rainwater we leave for the birds to drink and bathe in. She loves fresh rainwater.

The birds started calling immediately they saw me, expecting something to eat. They usually gather en masse and call together, which frightens our timid cat away.

So as soon as she finished drinking, she ran off to the side of the house where she could get some sun in peace.

We have some lovely sunny days forecast for this week and it does the soul good. As does seeing all the trees in bud, blooming white or pink blossoms all along the 20 km drive to the closest town.

I love fresh air, and it has been a joy to throw our windows open and let the breeze and sunshine in. With being home 90% of the week, I can think of no nicer place to be than here when spring has sprung.

Tuesday, 1 September 2020

Help is on the way!

So last week I got a phone call from the Aged care people to inform me that they can send a woman to clean for me. She will be wearing a mask and social distancing they tell me...

She is coming today early in the morning, so I have gotten up, dressed and breakfasted and stripped off our bed for changing. My fibromyalgia is flaring, but I have had to ignore my sore muscles and look to the next few hours when the cleaning lady is here.

You can't imagine the relief I feel as we can't manage heavy cleaning anymore. Vaccuuming, mopping and bath/shower cleaning knock us both out. As I have said to the Aged care people, I can do things at waist level like cooking and washing dishes. 

I no longer use the clothesline to dry my washing which is a shame because there's nothing quite like fresh laundry that's been dried by the sun. However, since my polymyalgia rheumatica bouts, I have trouble raising my arms: it even hurts to brush my hair. Which is why I now wear it short. It's manageable.

Today is the day I refill our medicine containers and that means that later on I will have to get to the chemist to get prescriptions refilled. I also need to buy electrodes for the glucose monitoring machines.

Our sugars are still too high, even though Chris is now on 20 units of insulin twice a day plus his oral medications. I have been put on Januvia 50mg a morning with 2 diamicron tablets. We are not winning this battle against diabetes 2.

So I am looking up dishes to make that are low GI and trying to learn about reducing blood sugar. And although it seems like I am taking steps backward, at least I am winning in the cleaning stakes because mercifully, thanks to Centrelink, help is on the way!

Saturday, 29 August 2020

Basking in a new world

Over the years, I have spent many a time in a hospital bed.  For weeks at a time, I would lie in traction with Scheurmann's Disease, with hardly a visitor to see me.

I recall every time my mother came in to see me, she would ask if my (then) husband had been in. The answer was no. In fact, he would drop me off at the hospital entrance and then take off speedily. I would only see him again when I got home.

It got so bad that I would never let him know that I was trying to pass a kidney stone or needed another bout of traction until the moment I had to be admitted for treatment. Then all hell would break loose. It was just a sad state of life wherein I wasn't noticed or wanted until a meal had to be cooked or a shirt ironed.

Of course, I would lay internalising why he wouldn't visit me, and the end result was captured in one solitary, heart breaking and mind numbing word: rejection.

In between hospital stays, I limped along life, serving my husband and family, yet feeling terribly alone and miserable.

In the course of time I left my abusive husband and married Chris 4 years after leaving. All came crashing around my ears when I got fibromyalgia. 

I came home from seeing my rheumatologist for my wide range chronic pain and fatigue, and along with a negative result for lupus, came the diagnosis of fibromyalgia.  The trip home seemed unbearably long as I rehearsed in my mind the scene of rejection again awaiting me with this latest news.

You can imagine my amazement when Chris made me a cup of tea as he listened to the diagnosis. He was the epitome of compassion and love. When he handed me my cup, he was astonished to see me burst into tears: not tears of pain like before, but tears of love, happiness and relief!

Holding me against himself, he said he was so relieved I didn't have lupus, and vowed to help me in any way he could with this new thing called fibromyalgia. 

He was true to his word and together we learned about this new enemy that threatened to destroy my happiness. We vowed to never give it the power over us to come between us.

Twenty two years later, we speak in terms of spoons and nana naps and Lists. Pacing and paracetamol and heat pads are our love language.  

As for the young woman watching out for her husband from behind the curtain: she has gone now, to be replaced by an older happier woman basking in a new world of love and that vital word for all fibromites: validation. 

Thursday, 27 August 2020

Fresh out!

So with Victoria locked down due to the Corona Virus, shopping online has been the norm for most people who usually shop in person.

Due to fibromyalgia and trying to avoid getting the virus, shopping online for my groceries has been the way I choose to shop. Until today.

Doing my list, I was getting frustrated at the amount of things I need being temporarily out of stock, so in the end Chris and I decided to go to our nearest Aldi. 

Disinfecting our hands and trolley and wearing masks, we skirted the aisles as quickly as we could. Having already made a list for Woolworths online, I knew what was needed and we were able to fly around there in about half an hour.

As soon as we got to the car and loaded the groceries into the boot, we got in, took our masks off and sanitised our hands.

Aldi does not offer home delivery, but even so, it is my preferred choice because I get more value for money. However, until Rona is over, I will still do a shopping list online and see just what I can order.

Most products in the store are available, but I still prefer to shop online. By doing the list before shopping day, I can see if it's possible to buy our food that way. Most likely with the current trend, most of what I need is fresh out! 

Monday, 24 August 2020

This Mainer Mom is great!

My friend, Karen is a Christian lady who suffers from chronic pain. Check out this latest vlog. It is so comforting. Check out the rest of her vlogs and maybe subscribe like I have...

Saturday, 22 August 2020

In the end, we win!

I have been talking to some women who also suffer from fibromyalgia and they have agreed that we sometimes have to set ourselves up to hurt.

If there's somewhere we have to go to and we can't reschedule it, we all have sometimes gone knowing that tomorrow will be horrendous painwise.

The once in a blue moon chance to have beloved grandchildren stay over comes and we often willingly plan to have them, in spite of knowing the consequences for tomorrow. and the next day. and maybe even the next.

Life is unpredictable, and we ill women know that sometimes pushing ourselves to accomplish something vital to our mental happiness, is going to be worth the physical pain it will unleash.

We must live our life even if that means planning to accept the pain. 

In fact, we would do well to prepare for it by planning to cook easy meals for the next couple of days and by postponing as much of our daily housework as we cab for the time being. 

We should make sure we have heating pads, electric blankets, comforting drinks and heaps of paracetamol on hand as well. Maybe some comfort foods like chocolate on hand would be nice. 

When we face the fact that we are most likely going to hurt tomorrow anyway, we might as well bite the bullet and plunge into life head first. We will have happy memories and/or a sense of satisfaction to cuddle up with the next day or two!

We may be setting ourselves up to hurt, but in the end, we win!