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

The only perk of being old

 

As you probably know, I have been feeling really unwell since I had RSV and this has coincided with a severe fibromyalgia flare from helping my sister move.

My Aged Care case manager came and visited me last week and she could see I wasn't coping too well with everything. 

She told me that I could have a cleaner come weekly instead of fortnightly from next week onwards. I was truly blessed to hear that.

I can have one of the beds changed each visit and alternate other chores like stovetop cleaning and shower cleaning.

It is good timing for me too. My Roombas have all died together... they seem to have a 2 year lifetime..

Anyway, knowing help is coming has lifted my spirits.  I guess getting the Aged Care Home Care package is the only perk of being old...

It doesn't take much!

As you know, we have my sister here with  us until she finds a new rented home. She's been here for 8 weeks now and I have been taking care of her.

My twin, like me, has fibromyalgia, heart and lung problems and has recently had RSV. It went through our house.

But until I am diagnosed, she is alone in suffering with Lupus. There's a question mark over whether or not I have it too. We are mirror image identical twins.

So suffice it to say, I have been looking after her and part of that is making sure she eats well. 

As I told you in a previous post nutrition can extend our life and certainly makes for a more pleasurable life. So I made sure my sister was eating lots of vegetables and fruits and red meat at least 3 times a week.

At her last doctors visit before moving in with us, she was told that the Lupus had made her very anemic so much so that she needed an iron infusion. She didn't cook much when she did cook... and sometimes her diet was not very nutritious. 

So, as I mentioned she's been with us for two months and her new doctor- (our doctor) ordered baseline blood tests. The results showed her iron has improved and she no longer needs an iron infusion.

This reinforced my belief that good plain homemade meals made from scratch with lots of vegetables and fruits, help extend one's life. The proof is there in the blood tests, for the life is in the blood. 

By eating well and staying well nourished, life can be made more enjoyable and prolonged. All it takes is a balanced diet and a little thought in purchasing our food. It doesn't take much! 

We walk that path together.

 

It's a sad fact that lately Chris and I wake up each morning feeling exhausted. We can sleep for 8 hours or sometimes 9 and still feel tired.

We ache all over and carry the "just woken up" brain fog all day. Our morning routine consists of bloods to check the blood sugar levels and then an insulin injection for Chris followed by a hearty breakfast of pills swallowed down with a nice cup of tea.

Our love language is spoons and our song of lamentation is that we don't have any or that it won't be sufficient for the day's activities. We live just to take another nana or grandpa nap.

Of course I have a double whammy of woes, with my diabetes and fibromyalgia. The pain never departs except for the brief few minutes Chris rubs my feet. I have the combined effects of peripheral neuropathy, in my toes especially and the foot pain that comes with fibro.

With ongoing chronic fatigue, I am certain to fall sleep just 5 minutes into my foot rub. I joke and tell Chris that these days it's better than sex!... only between us- I think it's true! I mean when everything hurts and it's hard to breathe with angina and pulmonary hypertension, foot rubs now are the only pleasure in life that steadies my breathing and still relaxes me..

And talking of breathing, that RSV flu type virus is still hanging around. Not as bad, but bad enough to have me keep my asthma puffers strategically placed at my dining table, computer desk and bedside. It too drains my energy and adds to the joy of a fibromyalgia flare.

Statistics show that more women have fibromyalgia than men, but I often wonder if Chris' chronic fatigue and constant body pains are indeed fibro... there's no particular test to find out, but it wouldn't surprise me at all...

Meanwhile, he lives the horrible life of a fibromite, but at least he doesn't have to validate himself with me. We walk that path together...

Not any time soon

 

These last few weeks have been difficult to say the least. We have been moving my sister in here until she finds a new home for rent. With fibromyalgia flaring, the spoons have not even been seen.

To top it off, RSV has been in our house and we have been knocked down like flies.With Chris, Julie and I all suffering from heart and lung problems, RSV hit us hard.

I caught it off my great-granddaughter when she came for a visit a week before she developed symptoms. Being a sharing person, she passed it on to her mother, Chris and Julie then me.

Chris only had symptoms like a bad cold and was ill for about a week, I was very ill with it lasting two weeks and Julie was sickest of all with hers lasting three weeks. Julie has lupus so it played havoc with her health.

This is not a virus to be played with. It honestly nearly carried Julie and I off. Julie told me it was worse than when she had Covid. I can only attest that it made me sicker than when I had pneumonia. I have never had Covid, and I tested myself at my sickest point. It was negative.

Now I am feeling a bit better but it has left me very exhausted and requiring frequent rests and/or nana naps. Maybe it's that and my fibromyalgia flaring. It was hard work moving my sister..

So to today: I am slowing trying to get my home into order. My floors need vaccuuming and mopping. My toilets are in need of a good clean and I need to conquer Dish City and Mt Laundry.

I will get there but not any time soon. 

I. have. never. felt. so. weary!

This last week has been very taxing. We have had to help my sick sister close down her rented home and move in with us until she finds another rental home.

We have been so stressed due to the increased pain and my fibromyalgia flare is off the charts!

There's times in life that you have no choice but to pitch in and this has been one such time.

Because of the stress we have come down with a chest cold which is the pits at the best of times!

All I can manage today is to make some  Jewish Penicillin. I am planning to have a nana nap soon.

Each morning I wake up unrested and have no spoons to speak of, yet I still manage to help in the packing and keep up with washing and dishes.

My grandson and son are moving the heavier stuff today so I am flaked out in my armchair.

I. have. never. felt. so. weary! 

Fading fast...

 

Lately it seems that my life consists of pain, fatigue, breathlessness and pacing. pacing. pacing.

Life demands certain things of us and for me it's looking after a sickly husband, a house that is in need of a good clean and now a convalescent sister who is here to recover from a nasty fall after hospitalisation for lupus.

On top of that, we are trying to find rental homes for her and one for my son who was her carer. 

My fibromyalgia is flaring  because I am stressed and all I seem to do is pace myself to ensure I keep the few spoons I wake up with.

I am back to sharing a bed with my husband as my sister is occupying my adjustable one to alleviate some of the pain in her injured back and legs.  Neither Chris or I are sleeping well at night.

So I follow a plan for a rest between tasks and by the afternoon I am so overcome with tiredness that I have to take a nana nap in order to have enough spoons left to cook dinner.

And as I sit resting, I realise that most of the day for me is now resting and pacing in order to just get through. even with minimal tasks planned.

And as the spoons diminish, I realise too that my strength is fading fast with fibromyalgia and old age. It is what it is.

I am fading fast.. the only thing about me that is fast! 

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!