I won't succumb to it...

 

I am currently unwell. My spoons have evaporated and everything that can ache or pain me, is. I am in a fibromyalgia flare.

We Aussies are in to our autumn or fall but the weather has been erratic with many days over 30C or 86F. With lots of rain to make it humid and steamy. It's bad weather for a Fibromite.

We have air conditioning but I have missed being able to go out into our back garden. So with temperatures forecast to be in the high 20's, I find I will be able to do that later on today.

I have managed to do some basic household chores. Our beds are made. I have tidied the kitchen and done a load of washing. 

There's a tray of sirloin steak out on the benchtop thawing. Later on in the afternoon I will peel some potatoes to mash and some pumpkin to go with it.

The birds are calling me. I am going to change the washing over and put it in the dryer then rest. Every Fibromite knows if you don't rest on bad days, a flare will last longer. 

After the next few chores, I am planning to go outside and read...and I won't succumb to false guilt.   

Don't let them dictate

I have been very ill off-and-on for several weeks now. But I needed to drag myself out of bed and "Make an Easter for the Family" as Connie Hultquist would say.   I will be okay. My husband (who is disabled) and I learn to live in pain and suffering.  He will say that he is going to suffer whether he is doing something in life, or sitting still and hurting.  He chooses to do things and live, rather than do nothing and suffer. He will suffer no matter what. But we put on a happy face and enjoy the family and our home and all the wonderful blessings we have.  Mrs White of Legacy of Home

 

As a chronically ill woman, I have seen two lots of sufferers- those who feel like Mrs White and I and those who take to their beds and surrender to it.

Just because the former types of ill people push on as much as humanly possible does not mean that their illness is all in their head and therefore subject to discipline of oneself. 

It means that they realise that they may as well try to live as normal a life as possible instead of taking to their bed like the latter half and doing nothing... 

We all have days where illness or disability makes it impossible to do anything,  ensuring we have to rest, but those who never try to live won't even try to have a life even on better days.

Last week I had a fibromyalgia flare and it was truly torture to try to do those jobs I need to do.. I had no other choice than to rest. But today is the first day I felt a bit better, and so resumed my "normal" routine and feel better emotionally for it.

Others would prolong the flare and continue to stay in bed as they often fear bringing on another flare. Instead, they often succumb to depression because they have mentally  put themselves in the invalid role and therefore often endure the loneliness and joylessness of the invalid.

Over the past 24 years of fibromyalgia and other illnesses, I have decided to push myself a little in order to enjoy more of my life. But there's always a balance- if I feel particularly down, I will take a nana nap or actually go to bed.

The trick is learning to co exist with these illnesses and try not to allow those dictators called "Spoons" to literally dictate how we will live each day and how much enjoyment we will derive from each of those days.

As I have been up for quite a few hours already and done some housework, my muscles are cramping and I need to rest. But at least I have some job satisfaction and can cross some tasks off my daily to do list...

Until next time, may you find some spoons to energise you and some motivation so as to enjoy the most of your life that you can today...

Don't let the spoons dictate your life every moment..

 

Some more to add to the mix

 

I have another couple of issues to add to the mix. Lymphedema with skin changes similar to this picture above.

I also have sugars over 17 fasting and it's making me feel dreadful.

I have just changed doctors since the move and she has gone on vacation for two weeks. I need to go on insulin.. 

I have been putting castor oil on my legs and it seems to be stopping the scaling which hopefully will stop the legs getting infected. My right arm is also affected...

To add the final nail in my health, I have been suffering from costochondritis which is very sore.

With a fibromyalgia flare happening as well, I am truly feeling dreadful. Prayers would be very much appreciated.

Setting things to rights

So today is Monday and unlike some people who hate Mondays, I quite like them. I see Monday as the first day of the week and it is a day to put things to rights.

Sundays are our sabbath and we only do those things that are truly necessary. After all, it's supposed to be a day of rest.

We chill out and watch online services and listen to worship music and nap. But with Monday comes the need to plan to incorporate those tasks that went undone yesterday. 

I usually have washing to do and at least one load of clean clothes to fold. I try to get caught up with that plus any dishes that need washing get put into the dishwasher.

For me the tasks that take the most time and are frequent flyers are washing folding and dishes.

Provided I am not in a fibromyalgia flare and have enough spoons, (and this is always unknown and erratic), I will tackle these today.

As I said, I follow Sylvia's Lists and I will loosely follow this for Monday..  

There's always a feeling of satisfaction when/if I can do these tasks on Monday's... but still, come to think of it... I always feel happy any day when I am setting things to rights..

We rarely get any validation

 

Those of us who suffer from fibromyalgia often have little sympathy or even care from a lot of people.

Most people haven't even heard of it and most who even have, often believe it is not a serious syndrome to suffer from.

They don't realise that fibro is in fact all encompassing to the afflicted person and has the potential to dictate how we live.

Not only does fibromyalgia dictate our physical life, but our social, mental and even spiritual life. The person who states that it does not have a great impact on their life has not experienced a full blown fibromyalgia flare.

It is a sad syndrome as it has very few visible symptoms and people imply that we are faking it.

The only thing we fake is feeling better than what we do. We rarely get any validation.

It is what it is

 

So while I was still asleep, just after sunrise, Chris took some photos of our back garden.

He told me there were about 40 corellas eating the birdseed and meat scraps from dinner that I threw out after dinner.

Later on some rosellas joined them and after they left, the sparrows came down. Our place is like an airport.

Later on our cleaner from the Aged Care Provider is coming for a couple of hours and I will be straightening up the kitchen and loading the dishwasher as soon as I finish talking to you.

The washer's already going as I am washing some bedding for her to change the beds today. Of course, I will be using my dryer.

With fibromyalgia and polymyalgia rheumatica, I always use it. I have tried using my clothesline but the pain is really debilitating and I can't bear it. Like I always say, it is what it is.

Letting nothing you dismay!

  

With the continuation of my fibromyalgia flare, I have been simplifying my Christmas decorating, gift buying and so on.

Chris put a wreath on our front door and I decorated our mini Christmas tree. It sits on our coffee table measuring eighteen inches and has lights.

I have no spoons to go shopping and have done most of my Christmas gift buying online over the year. It has saved me so much energy. These days, just getting dressed is a struggle, let alone going out shopping.

Woolworths supermarkets have a delivery service for online shoppers and I take advantage of that. I have my food list for the festive season and I will be ordering from that.

Cooking wise for Christmas Day, I will be preparing  a fresh salad and some curried hard boiled eggs. The rest of our food will be pre cooked. We will be sharing a meal with family  who are all going to bring something.

Gift wrapping is not a job I enjoy and with a fibro flare in full force, I will be giving the grandchildren money.

Christmas with a chronic illness like fibromyalgia is a stressful time, but with a bit of planning, it is possible to get through and maybe even enjoy the day.

So I find myself ad libbing to the carol "God rest ye merry gentlemen!" by singing "God rest ye tired Glenny Hen!" followed by "let nothing you dismay..."

Let's resolve to make this Christmas a simple affair and enjoy the festive season as much as possible in spite of fibro. And remember- we will be making memories that will always be cherished in years to come. "Let nothing you dismay..."

Better days are coming!

 

So yesterday my occupational therapist and her colleague came to give me a trial run of my new motorised scooter, similar to the one pictured here.

It has all terrain wheels and an hour's worth of charge, plenty for me to go visit my sister who lives nearby.

It is part of my Aged Care package and will make my life so much better since I can no longer drive.

This scooter requires no knee action which is great for me as that was the reason I can no longer drive.

Also my bath lift seat is coming in a few days and I am looking forward to that as well. I have bought some Magnesium bath flakes to soak myself in. I am hoping it will lessen my fibromyalgia muscle pain...

As far as hygiene and travelling independence goes, I can say that better days are coming! 

Rome wasn't built in a day!

 

As you probably know, we have recently moved again. It is almost complete with just a few boxes to unpack.

We are so very tired and I have exacerbated fibromyalgia and angina pain.

We love this new house and is still quite large like the one we have just left. But honestly, I really hope we dont have to move again because I feel quite done in.

Most things now have found a new home, but as soon as I recover from the move, I will declutter and organise our things better.

So I am finding myself falling asleep at the computer or feeling really razzed, and I have had to have a nana nap during the day or I won't have enough spoons to cook dinner...

And speaking of dinner, I have been making use of my slow cooker to help me when I haven't got any spoons. It has helped take the pressure off me.

Lately having no spoons is my new normal so I have had to rest and pace myself. 

Something this move has taught me is to be patient. I have had to learn to wait until others are able to help me and my new mantra is "Rome wasn't built in a day!"

Part of your tribe

Sadly, I walk the lonely path of mental illness and chronic illness and it can be a lonely path.

However, I have been blessed with a caring and gentle husband who stays beside me and who has my back. It is such a comfort to know that his love isn't conditional on how fast I spin my wheel.

If you have someone like that in your life, consider yourself blessed. In this cold and crazy old world, it's hard to find a good heart.

Thank God for people who support us in our illness or disability- they truly are God given. Cherish them. They are kindred spirits and part of your tribe...

First we have coffee!

 

As you probably know, my twin sister is ill and has been living with us for the last five months.

She has now moved into her own new rented home and my son, her carer has moved in with her. She's in need of a carer.

Helping her has left both Chris and I spoonless and that condition is not going to improve any time soon. We have now found a new rented home two minutes away from them and the move is happening in a few weeks.

Although we feel the effort will be worth it, finding the spoons to move is a hit or miss thing. I must force myself to keep going.

I am suffering from an expected fibromyalgia flare, my knees are hurting and I cannot move my neck thanks to polymyalgia rheumatica. 

I am happy to be moving but not so good with the pain. But I pace myself taking frequent breaks and drinking endless cups of tea.

My kettle is constantly boiling for a cuppa and it is the first thing I do each day. I join millions of others in enjoying to lifting qualities of coffee or tea to start each day.

Like I read in a book, "First we have coffee!", it has proven to be true for me, only my lifting beverage is tea! 

Enough acid to rival Chernobyl

 

I have been on Somac for GERD for at least 20 years and I have just learned that it has been allegedly responsible for giving stomach cancer and kidney disease to many users.

Honestly, I don't know what to do and so I have made an appointment with my doctor next week to discuss it.

My GERD causes me to aspirate my acid and stomach contents thus inducing aspiration pneumonia three times so far. I am now in a dilemma to know what to do.

There's been a class action in Australia and it seems that many people have suffered after taking it. I will update after I have discussed it with my doctor.

Honestly, it's a bad time to stop using them with being stressed, tired and fighting a long fibromyalgia flare. I pump out enough acid to rival Chernobyl's meltdown.

Shanks as pony

So today I handed in my driving licence. Sitting here tonight, the enormity of my decision and resultant actions gave me pause to think.

The fact that I have torn ligaments in both knees meant that I no longer have enough strength to apply the brakes or accelerator. I have become a danger to myself and others.

With constant brain fog from fibromyalgia as well, I felt it was time to stop driving.

Vic Roads sent me paperwork to have my doctor and optometrist clear me to keep driving as I suffer from type 2 diabetes and that can effect the eyes.

I was going to get this done but then I realised that my eyes are not the only risk when I drive- my knees not working is as great a risk.

So instead of going to get my eyes checked, I decided to just stop driving. As I said, I handed my licence into Vic Roads.

And now, I am sitting wondering if I have done the right thing- yet I know I really had no choice.

There is always the option of walking around if I have no one to drive me somewhere... it is known as shanks as pony- using one's legs as the mode of transport.

Herein lies the problem with that- there is no shanks as pony, because I can't walk with torn ligaments that can't be fixed.

I hadn't thought much about it until now, but here it is- no driver, no car, no money- and sadly now, no shanks as pony!

Sufficient to the day

 

As  a woman who suffers from chronic illness and pain through fibromyalgia,  I often succumb to bouts of depression. I have a few tips on overcoming it. 

First and foremost, start your day in prayer. Ask God for the strength to face the day and play worship music to lift your spirit.

Try to be in the moment and take one day at a time. That's all we can tackle otherwise, the sense of failure can be overwhelming. We aren't meant to take it on all at once.

If you try to just focus on the next task at hand and not dwell on the future, it will help your attitude to realise that you have accomplished something. It will then snowball as you progress through the day.

With chronic illness, I set myself just one or two daily goals that are achievable: for me it is wash the dishes and put away the clean clothes. I only focus on those goals that I know are achievable and if at the end of the day, they are done, then I feel a sense of accomplishment instead of defeat.

Nothing depresses me more than a feeling that I have achieved nothing all day. I don't worry that others may say "for goodness sake, it's only washing dishes..." for us in the throes of illness, be it mental or physical- it's a big deal. Delight yourself in small victories.

I find that in setting small goals it knocks the cloud of gloom off its perch and makes me hopeful that I will be able to rise above the depression. Give yourself a high five and see that any job you do is a step in the right direction. It still blesses your family and serves the LORD. 

I think when we are depressed and/or in pain, the desire to go Home to the LORD is strong. After all, we are tired of living in a world of pain and we look forward to our redemption. But in saying that, we still have a work to do until that time. 

As FlyLady says, baby steps. But just taking baby steps lead us out of our rut and it is that first baby step that will hasten our healing of depression and sense of failure. 

  Sufficient to the day is the evil thereof. Matthew 6:34 

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! 

A common thread

 

I recently saw this beautiful painting that evoked happy memories of both my childhood and my mothering days.

With a large family of seven to wash for, I usually washed three loads of laundry daily and hung it out.

So many years ago,  and a time when the days were long but the years were short. Now mostly a distant memory. I now longer can hang my clothes out.

Fibromyalgia and polymyalgia rheumatica has put paid to hanging the washing on the line. Flexing my sore muscles is so painful these days. I am forced to use the dryer.

I really loved the smell of line dried clothes and delighted in this painting with the children in the yard. 

Hanging the clothes out to me is synonymous with family life. It speaks of service to family, activity and life.

Globally, I think we can all concede that washing on the line is a common thread that unites the human family.

When you got no spoons everyone has to help!

So my respite from pain has come to a sorry end. I have been hit with the Mother of all Flares. Just breathing is too much effort and sleep is brief and light. The truck that hit me didn't even stop. 

I have been pacing myself majoring on keeping the dishes and the washing up to date. It hasn't been too difficult really as I have planned in advance for the inevitable fibromyalgia flare that comes after a respite.

Most people who don't suffer from fibromyalgia would call me a pessimist, but we Fibromites know how fickle our body is and how greedy it is for spoons. We never can have enough spoons to say we are energetic. Spoons are energy measures

It's enough to have enough spoons to take a shower some days, and we usually suffer after for it in spite of the pride in ourselves that we made the effort and did it..and the luxurious feeling that being dainty brings.

No, we are realists who accept that our bodies are treacherous. They lure us into a false sense of joy in a seeming abundance of spoons- well enough spoons to make us believe that we can change the sheets, bake a cake, vacuum the lounge room or go shopping. In real life shopping, not just on the computer.

Knowing better really, but delirious in the freedom that a few spoons brings, our joy knows no bounds and we actually dare to live like we did before Fibro claimed our lives, bodies and joy. And we keep living in the moment full of joie de vie until the joy and spoons are gone.  

No, I knew from 20 years experience that my respite from pain would be short-lived and it was.  But because of planning for it, it hasn't seen me in a total mess, overwhelmed with meals and mess.

I had my dishwasher and I kept up with the dishes. I did a load of washing a day and I dried it in the dryer. But my greatest life saver was my frozen dinners I have in the freezer. They saved the day.

In all honesty, though I haven't kept the house running smoothly all by myself. I have had to enlist Chris to help me with stacking and unstacking the dishwasher and I asked him to put his own clean clothes away as soon as they came out of the dryer.

He has been really good actually- a blessing really. He also encourages me to take a nana nap, and feeling so fatigued and sore, I am so glad. We all need a hand when we are feeling so wretched and when you got no spoons everyone has to help! 

My thermostat's broken!

 

Once I passed menopause, I thought I would be free of hot flushes and sweaty nights, waking up in a bed of sweat and feeling nauseous.

However, fate was not kind to me and as soon as I finished the menopause, I became ill with fibromyalgia.

To be honest, I am never at a normal temperature. On blood thinners for heart stents and antiphospholipid syndrome (or sticky blood), I feel the cold keenly and on any given day while everyone in my home wants to turn the heating off or down, I am there pleading my case for more heat.

Ten minutes after the heat is put up for my benefit, I have to turn it off again. I feel sick- I am sweaty and unwell.

About an hour before I go to bed, I turn my electric blanket on as I feel the cold so much. I sink into the warmth as it soothes my fibro muscle and spinal pain. A couple of hours later, I wake, sweaty, nauseous and out of sorts.

I strip the minkie blankets off but I feel cold so I put some back. Five minutes later, I am hot again and I stick one leg out of the blankets and fall sleep again.

This cycle of hot/cold repeats through the night. I am turning like a rotisserie chicken! Thanks to fibro, my thermostat's broken.

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.

My Cleaning Schedule

           

As you know, I have now been approved for 2 hours of  home help a week. It has been a difficult time lately with a fibromyalgia flare that never seems to end. 

I have my sister here with us for the moment, so having some extra help especially in bedmaking, will help me immensely.

Just keeping the washing up to date, menu planning, cooking, dishes, food shopping, bill paying, and organising medicines for the week and ordering them from the doctor and chemist, is enough for me to cope with.

So this extra 2 hours will help me immensely. Maybe then my fibromyalgia flare will finally go away!

 

WEEK - MEL-6/9/2024

KITCHEN

MY BED AND CHRIS' BED

TOILETS/ ENSUITE

FLOORS

WEEK - TANYA -13/9/2024

KITCHEN

GUEST BED AND MY BED

TOILETS/ENSUITE

FLOORS

WEEK - MEL- 20/9/2024

KITCHEN

GUEST BED AND MY BED

TOILETS / SHOWER

FLOORS

WEEK - TANYA- 27/9/2024

KITCHEN

GUEST BED AND MY BED 

TOILETS / SHOWER

FLOORS