Showing posts with label acceptance. Show all posts
Showing posts with label acceptance. Show all posts

Monday, 26 August 2024

It is what it is! indeed!

 


In my efforts to still be mistress of my home in spite of severe health issues, I have tried to pare down my necessary daily tasks.

I can forgo doing the washing for a day or two. I can not make my bed or do much cleaning. But every single day I find I must cook, which is a necessity that brings the second necessity of the day: doing the dishes.

Oh I have left them before during a fibromyalgia flare. But I have learned that they seem to multiply like rabbits- my kitchen sink and bench are testimony to this!

I have left the dishes until the morning or even until the evening, but the mess on the plates and cutlery makes the job not only labourious, but "yucky". So I have learned to keep abreast of them.

Now I know some people use paper plates to avoid doing the dishes, but I am old school. Besides, everything tastes better on a china plate or in a glass or cup. I detest polystyrene cups or picnic cups.

Occasionally during a bout of angina or fibromyalgia or even a day of back pain, I am happy to order take away meals... but it is such a nasty blow to the budget that this is rather rare.

So then I am now convinced that I must acquiesce to doing the dishes daily as we absolutely must eat- there's nothing else I can do about it except cook.

Finding two daily essential jobs wasn't easy because there are so many more things one could count as essential. 

More over, one thing chronic illness has taught me is that spoons dictate not only one's lifestyle but standards.

One can either accept less high standards or die trying to sustain them. And given the effort in just breathing and being some days, the standards become more achievable.

I have had to accept what the young ones say, "It is what it is!"  Indeed! It is! 





Thursday, 16 May 2024

Sex isn't everything!


This picture reminds me of Chris and I in the kitchen...  I often can be washing the dishes and he will come behind me for a cuddle.. I still blush  and giggle like  a school girl!  I usually go weak at the knees when he kisses the back of my neck, and I turn around and kiss him passionately.  Finally, we break away, breathless with romance and laughter!  Most times, he then pitches in and helps me finish washing up.

This little dalliance of ours to us is quite romantic and that coupled with the fact that Chris helps me with the dishes, makes me feel nurtured and happy- it doesn't take a lot for me! Which is good, because money is short for a lot of flowers and chocolates.

We do go out together for meals whenever we can salt away a little money.  Nothing too expensive, but we bring our own ambiance!  Just looking into each others' eyes and holding hands over the table reminds us of our early days together and keeps us focused on each other.  Truly, we do adore each other.

Because money is in short supply, and because we constantly laugh together and cuddle often, we feel that special occasions such as Christmas, birthdays and Valentines' Day aren't necessary to show affection and love. We in fact, do not buy gifts for these for each other. And it is perfectly fine with us. We do, however look at our wedding photos and reminisce a lot on our anniversary or any other date significant to us...

I think it may be the fact that we are an older married couple that makes it easier to see romance in ways that younger couples don't.  With age and fibromyalgia and heart and back problems and Chris with his diabetes, sex is either umcomfortable or impossible. So both Chris and I look forward to a bubble bath at home with a good back wash and nail trims or a foot or back massage.  We do that for each other on a regular basis. To us, nurture is romance!

Chris loves me bringing his breakfast into him in the morning. This to him is romantic and although his not buying me presents and sending me cards may seem that he is an unromantic man, nothing could be further from the truth.  He sings to me! We have some special songs that he says were written just for us, and he will play them on the computer, and take me in his arms and croon to me as we dance slowly round the living room.

Because I am often in hospital, Chris shows his care by staying with me most of the day until visiting hours are over, just stroking my hair and holding my hand. Or he will come with our laptop and headphones for me. My heart melts with love for him.  We can't stand to be away from each other.

Illness, medications, no spoons and age have curtailed our times of intimacy, but we manage to show love to each other in ways that are imaginative, erotic and very caring.  There is absolutely no thoughts of unmet needs- love can be expressed in ways other than full sexual intercourse, and we delight in each other regardless! If sex happens, it's a bonus!

So we don't care about no presents or cards for Christmas, or birthdays or Valentines' Day-  with the romantic sparks that still fly between us, and our little dalliances, every day is Valentines' Day. 

I thank God for Chris as I am one very blessed wife, and I tell him often.... he finds that very romantic too! We are proof that you can live without sex! Sex isn't everything!




Tuesday, 2 August 2022

We need to talk


So I am aging, overweight, have had over 50 kidney stones and 5 surgeries to remove them when they were impacted, and have given birth to 6 children.

Because of this, I used to find that a sneeze could have disastrous results, causing me embarrassment and discomfort as I wet myself. So much so, that I went to a physiotherapist who taught me how to exercise my pelvic floor using Kegel exercises.   They helped me quite a lot.

Nothing else has changed - one cannot change the past- but the only difference was my consistent Kegel exercising. This is for men as well as women, I was told. Anyway, I recommend them to everyone who has stress incontinence.

However, as much as Kegels have helped me, I have noticed that when I am in a flare of fibromyalgia, often I rediscover the joys of stress incontinence. 

It seems to me that fibromyalgia weakens my muscles in my pelvic floor and causes lack of control of the bladder. Just another problem fibro brings that many don't recognise or talk about.

I have purchased some undergarments that absorb urine yet look like normal underwear  I wear them when I am in a fibromyalgia flare, and they do a great job. (There are similar ones for men) It seems lately as I am in almost a constant state of flaring, that I am wearing them more often. 

It's just another pain for us Fibromites to endure, and I hope by sharing about this, it helps you if you have the same problem. It's nothing to be ashamed of and it's something we need to talk about.


Sunday, 1 May 2022

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...



Friday, 22 April 2022

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.


Saturday, 26 February 2022

Sex isn't everything.


This picture reminds me of Chris and I in the kitchen... I often can be washing the dishes and he will come behind me for a cuddle.. I still blush and giggle like a school girl!  I usually go weak at the knees when he kisses the back of my neck, and I turn around and kiss him passionately.  Finally, we break away, breathless with romance and laughter!  Most times, he then pitches in and helps me finish washing up.

This little dalliance of ours to us is quite romantic and that coupled with the fact that Chris helps me with the dishes, makes me feel nurtured and happy- it doesn't take a lot for me! Which is good, because money is short for a lot of flowers and chocolates.

We do go out together for meals whenever we can salt away a little money.  Nothing too expensive, but we bring our own ambiance!  Just looking into each others' eyes and holding hands over the table reminds us of our early days together and keeps us focused on each other.  Truly, we do adore each other.

Because money is in short supply, and because we constantly laugh together and cuddle often, we feel that special occasions such as Christmas, birthdays and Valentines' Day aren't necessary to show affection and love. We in fact, do not buy gifts for these for each other. And it is perfectly fine with us. We do, however look at our wedding photos and reminisce a lot on our anniversary or any other date significant to us...

I think it may be the fact that we are an older married couple that makes it easier to see romance in ways that younger couples don't.  With age and fibromyalgia and heart and back problems and Chris with his diabetes, sex is either umcomfortable or impossible. So both Chris and I look forward to a bubble bath at home with a good back wash and nail trims or a foot or back massage.  We do that for each other on a regular basis. To us, nurture is romance!

Chris loves me bringing his breakfast into him in the morning. This to him is romantic and although his not buying me presents and sending me cards may seem that he is an unromantic man, nothing could be further from the truth.  He sings to me! We have some special songs that he says were written just for us, and he will play them on the computer, and take me in his arms and croon to me as we dance slowly round the living room.

Because I am often in hospital, Chris shows his care by staying with me most of the day until visiting hours are over, just stroking my hair and holding my hand. Or he will come with our laptop and headphones for me. My heart melts with love for him.  We can't stand to be away from each other.

Illness, medications, no spoons and age have curtailed our times of intimacy, but we manage to show love to each other in ways that are imaginative, erotic and very caring.  There is absolutely no thoughts of unmet needs- love can be expressed in ways other than full sexual intercourse, and we delight in each other regardless! If sex happens, it's a bonus!

So we don't care about no presents or cards for Christmas, or birthdays or Valentines' Day-  with the romantic sparks that still fly between us, and our little dalliances, every day is Valentines' Day. 

I thank God for Chris as I am one very blessed wife, and I tell him often.... he finds that very romantic too! We are proof that you can live without sex! Sex isn't everything! (This post has been written with my husbands' permission)

Thursday, 27 January 2022

We live in a fallen world




 I have tried not to dwell on my illnesses these days, but still find that I have to remember to do this:

Accepting that one's life is going to be difficult due to ongoing illness makes for a happier life. When the chronically ill person decides to give it to God, and to cling to Him instead of succumbing to false guilt, life takes on a normality in what many would see as anything but. It is a surrender, if you will.
Suffering does not make us second-class Christians, as some false teachings would purport. Nor does it mean we are faithless or aren't reading our Bibles or standing on the promises of God regarding healing.
Furthermore, being ill does not check us out of God's watchful Eye of concern, or mean that He is an uncompassionate God. No, we all are subject to frailties and problems in the flesh because we live in a fallen world... we have not been singled out to suffer...
God has given us things to do in our suffering and it is important that we stay close to Him and continue to read the Word and pray. It is not that God has moved, when He feels far away during a flare or illness, but our emotions are also hurting as a result of our condition.
It is important to pray that God heal us, and to ask the Church to anoint us with oil according to the Scriptures... It is essential to our emotional and spiritual health to stay in the faith and believe that God can heal us, but to pray for strength until- or even IF it is His will to do so.
I know that should/when another flare comes for me that I will have to cling to Jesus and reread what I have written here (for I write it for myself as well as you). I will need to surrender this next painful chapter of my life, knowing that God will still be there for me.
Surrendering our pain and our life to God is the only thing we can do.... meanwhile, I thank Him for the few days of respite..

Suffering is not our fault, but is because we live in a fallen world.


© Glenys Robyn Hicks



Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers. 3 John 1:2

Thursday, 18 November 2021

Coming to terms with it


Fibromyalgia is flaring and my spoons are scarce today, so it's just basic home duties for me.  Dishes, washing and meals.

If I can get down the steps today, I want to sit in the garden swing. I need the fresh air and relaxation that watching the birds brings. They are getting quite cheeky and tame now. I only have to open the door and they converge on the back porch/decking chirping at me to get them something to eat. 

They stand there practically with their hands on their hips, feet tapping: why are we waiting? Quite funny. I know they case the house out- I see their shadows on the roof and carport. I will miss this place. Chris wants to move back into "civilisation" when we sell the fiver. With Covid, we haven't had any chance to get people here to see it. 

As with coming to terms with the knowledge that my fibromyalgia and other issues will not get better, so I am trying to come to terms with missing out on country life.




Monday, 15 November 2021

Keeping my wheels turning!


 

Good morning. It's a new week! We have to go out today, just some grocery shopping and a trip to the post office. That will be before I tackle last night's dishes

I was so tired last night that I left them, hoping to wake up with some spoons (energy). That didn't happen so the grocery shop takes priority today. 

Some lamb chops are defrosting for dinner tonight. I will do mashed potato, vegetables and gravy with them. A sandwich will suffice for lunch. 

I use the frozen mashed potato, steam packs of vegetables and instant Gravox gravy. I am fortunate in that Chris loves meat of some sort with two veg and if one of them's mashed potato, he's a happy man.

Being able to go without peeling potatoes and shelling peas is a godsend for me. The arthritis in my hands, the torn knee caps and spinal problems make standing to cook to prepare a nightmare. I am too short to sit on a chair as I can't see over the benchtops properly. 

When in a fibromyalgia flare like today, it is just the icing on the cake. It literally tips me over. The pain is incredible and never lets up. I do have a high pain threshold but when the pain is 24/7, it wears you down.

I think I will make myself a cup of tea and take some painkillers. That's the only way I will be able to function today. They can join my other ten tablets taken this morning. I swear I rattle when I walk.  It is what it is!  But hey, whatever keep my wheels turning!



Friday, 21 May 2021

You 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...



Monday, 26 April 2021

It is what it is!


Many of you will know that my husband, Chris is facing serious health issues. He has recently been diagnosed with heart failure.

With fluid on his lungs, he feels like he is suffocating when he lies down, and so he sleeps sitting up in the recliner.

The fluid tablets don't seem to be moving much fluid off his badly swollen legs and feet either. His feet are so swollen that no shoes will fit him.

I was able to buy him some orthopaedic slippers that come apart and are fastened around the feet, ensuring a comfortable fit. They are quite warm as well which is a bonus in our autumn chilly mornings here.

We have many cardiologist and doctor appointments and tests in the coming weeks and  it really effects my fibromyalgia badly. But we keep on keeping on because we don't have any choice.

After a day out for medical appointments, I am usually running on no spoons and that is when Chris looks after me.

He makes me a cup of tea and turns my electric blanket on. He encourages me to rest and chooses an easy slow cooker meal for dinner. I usually cook that on the day whilst we are out.

I allow Chris full reign of what he wants to eat as his appetite is not as good as before he got sick. So you will find us discussing menus the day before.

I do all organising for his appointments, ensure his medications are made up, sort them out for the week and drive him to said appointments if he doesn't feel up to it.

He in return guards my health and makes sure I get uninterrupted sleep as I don't sleep soundly due to fibromyalgia pain.

In line with this, we now share separate bedrooms. Our marriage is as strong and loving as ever, but due to illness we both have found we sleep better apart.

It wasn't what we really wanted, but it is just part of our own new normal. We still sit together watching TV and we hold hands all the time. But with health issues causing insomnia, it is the only way we both can help each other. It is what it is.


When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Proverbs 3:24a

Thursday, 1 April 2021

Is a little compassion too much to ask for?


 It is so difficult to adjust to a new normal after a diagnosis. After many years of wondering why I had all over pain and tiredness, I finally got a diagnosis of fibromyalgia.

I was relieved that I had a name to put to the painful syndrome that sucked the life out of me and added to my woes as a sufferer of angina, arthritis and back pain. And polymyalgia rheumatica thrown into the mix.

It made sense that with all these ailments, I would be finding it more difficult, or even impossible to do the chores that after a lifetime of being a wife and mother, were familiar and regular as the rising and setting of the sun.

With the newest diagnosis, came a depression because not only was I totally frustrated with having to constantly adjust to my new normal, but I was not afforded much compassion or understanding from others.

It was intimated, but not said, that I was lazy and using ill health as an excuse to be lazy. Nothing could be further from the truth. I was laid low emotionally as well as physically.

These days, it is rare to find someone who is compassionate for the chronically ill and/or aged. And it compounds the frustration and anger one can feel as one goes through the cycles of grief with a new diagnosis that limits one further.

I know a little understanding from others would go a long way to help me adjust and accept it every time I am faced with a new normal. 

Sadly, not only do most people now not want to listen about chronic illness, but they don't want to know. 

It's not a hard thing to commiserate with the trampled flower bowing under the weight of pain and illness and later, stigma. 

We don't necessarily ask for help from others, but is a little compassion too much to ask for? 


Saturday, 9 January 2021

Grieve and move on!


When confronted with the diagnosis of a chronic health condition like fibromyalgia, we can often grieve for the stronger, healthier person we were before it and it's like any other form of grief. 

We are angry, we bargain, we accept it, we move on. The hardest part in moving on is linked with acceptance: we have to find our new normal. 

I find there's a period of anger and denial, then acceptance. And it varies with each of us.  

Acceptance is the pathway to moving forward. So it is critical that we come to acceptance by focussing on what we have left, rather than what chronic illness has taken away from us.

As in all grieving, no one can say how long it will take us to come to acceptance, but it must come so that we can find our new normal and live our new life in that new normal.

What chronic illness takes from us is more than the physical. But even so, despite feeling down emotionally, we should and must focus on what it hasn't taken.

I have days where I still mourn the loss of basic abilities like home cleaning, showering and walking far. Today is one of pain with fibromyalgia to the point that I can't straighten my fingers and even my eyes ache.. 

My to do list today is not big, but it. is. what. it. is.
  • Clean the kitchen
  • Cook dinner
  • Shower sometime before bed

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.

                                                                                                                                                                                                        
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          

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. 




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! 




Friday, 14 August 2020

The last stitch


So I decided to do some knitting recently. As a knitter all my life, I have a considerable stash of yarn and knitting needles. 

Vying for my attention are a large assortment of crochet hooks, needles, cottons of a myriad of colours, embroidery cottons and buttons. 

Dragging my knitting bag out of storage, it was like a greeting of old friends. I have been knitting since the age of 6 when my grandmother taught me both to knit and crochet.

We have 15 grandchildren and 2 great-granddaughters and I made my customary jacket, booties and bonnet set in blackberry stitch for all of them- except the little great-granddaughter. Goodness knows, I tried to make her a mint green shawl that her mother had requested, but halfway through, it got too heavy and I had to abandon it.

I refused to be beaten and decided to do it in squares, but alas, my deformed arthritic fingers could not manage to crochet. We moved out of the RV and with plenty of time at home, I decided to give knitting a go again.

As I cast on for a little jacket, I suddenly was overcome with tearing pain and searing muscles, and my fibromyalgia screamed, "Enough! How dare you think you can enjoy yourself by being creative!?"  Tearfully, I put the wool and needles down, went to the kitchen and took some paracetamol.

I rummaged through my knitting bag, the memories overwheming me. Leftover wools from all the previous baby clothes I had ever made, a remnant of the shawl I commenced but couldn't finish and buttons- every colour and all the same little pearlised look. 

A haunting memory of the endless baby jackets over the last 54 years of expecting children then grandchildren assaulted my brain, leaving me with a certain sadness for happier years and then years gone by so quickly.

Fibromyalgia and chronic pain have taken away so much from me, and it was hard to put that bag away again. But I will keep it to remind me of happier times when my muscles didn't hurt just keeping my arms up to knit or my neck didn't feel like it was breaking as my arms moved in quick rhythm to the casting on. 

I know this probably isn't blogging material, but I think we Sacrificial Home Keepers need encouragement. So, enjoy what you can still do, because with fibromyalgia and other chronic illness, we never know when it will be the last button we sew, letter we will handwrite,  or like me, what will finally be the last stitch.


Tuesday, 11 August 2020

With tea, morphing I am


So just as I thought my domestic problems were over, I was informed that my home help will not be coming until the current Covid 19 restrictions are lifted. 

I am now without any help in the home and it has deflated my spirits. It's understandable with Victoria being in Stage 4 lockdown that it would happen. I get that. But it's just one more thing to add to the drama of Covid 19.

In order to keep our home in some semblance of order, I am going to use Sylvia's Lists and FlyLady

My fibromyalgia flare has gone a bit and I have a few spoons, but I still need help with cleaning the bathroom and doing my floors. It is not to be.

With staying at home restrictions, I am seeing the need for help materialise on a daily basis, and there's nothing I can do about it. Certainly getting Covid 19  because my house needs a clean is just not worth the risk.

So I sit ruminating and quietly sipping my tea and morphing into a Baby Yoda. Or something. Yes, with tea, morphing I am...




Sunday, 2 August 2020

Rona has found us!


We live in a little town in country Victoria Australia. We are in the perfect spot to shelter from Covid 19 or Rona as we call it.

We have under 500 people in total, a pub, a small police station, a small post office and a country shop. And a couple of quaint old churches.

Our town is so tiny that we don't have the postman call on us: we have PO boxes. So very little chance of Rona coming up here.

So you can imagine our shock and horror when we have found out that Rona is rearing her ugly head in our little shire! It's the one downfall of this pretty little town.

She is so pretty that people come here for a Sunday drive, and yes- even those who have tested positive for Rona! And they bring it from the large towns to us.

So bad is the new infection rate in Melbourne that it has been put under stage 4 lockdown. We are following with stage 3 on Wednesday, and mandatory wearing of masks starting midnight tonight for us regional Victorians. 

We are more than over this but it is what it is. Chris and I are going to stay home, except for chemist and doctor if face to face contact is necessary. Although we have no children, we will be living along these lines

It's sad that it's come to this for Victoria, but it's necessary. We are the lucky ones living up here, but even so, Rona has found us!