When the fog clears, tea's on the list.

 

Recently I have been having trouble remembering things. At 70, I worry about dementia and think that maybe I am going down that path.

But in talking with people who suffer from fibromyalgia like I do, I realise that fibro brain fog can make one forgetful. Especially during flares.

Having just moved house about 6 weeks ago, I am just starting to recover physically. I have a flare that is pretty constant with no spoons and I do forget things. And words mid sentence.

I don't think me forgetting to order tea in the online grocery order really means I  have dementia. I guess fibromyalgia flares can do that.

Looking through Marketplace the other day, someone was selling a bassinette identical to the one I had for my 4 children. It brought back memories like they were only yesterday.

But that didn't make me feel very at ease about my forgetfulness because dementia robs one of short term memory. But then so does fibromyalgia during a flare.

Considering all my previous times of brain fog during a flare, and my subsequent good memory, I surmised that it was not dementia, but brain fog from said flare. 

I believe when the flare abates, and the fog clears,  I will remember the tea in next week's shopping list. 

We're going for a run

As you know, I have had to resort to using a wheelchair when I go out.  It is not something I am happy about, but it is a necessary part of adapting to my new normal.

Along with walking, there are a few other things I have had to adapt to as well. 

I sit on my shower seat. When I get out, I sit down again and dry off. That's about all the time I can stand.

Most times, Chris stacks and unstacks the dishwasher and this has stopped me having to stand and bend.

I always use the dryer even in good weather. I miss the smell of sun-dried clothes, but it is what it is.

I do make my bed for company, but even so it is just pulled up quickly, nothing fancy. I can't stand to tuck it in and I can't bend either...

With the ageing Australian Government Package, I have a support worker come every two weeks. She changes our beds.

Also within this Home Care Package, I can order ready cooked frozen dinners from Lite N Easy. The meals are designed by a dietitian and cooked by a chef. They are quite delicious and save me from having to stand to cook and I know we are eating well.

I am grateful for all this as it allows me to still be mistress of my home in spite of illness, pain and disability. But even so, I find myself longing for the soon rapture of the Church.

It will be so glorious to not only see my Saviour, but to be able to breathe easily, feel joy and go for a run...

Not falling off the vine

 

Since turning 70 last May, I have noticed a rapid decline in our health. Heart issues are worsening, pains are hurting, fibromyalgia is making spoons are scarce and my mood is darkening.

We both are enjoying the peace in our home that has been jealously guarded and nurtured. Quite simply, we cannot cope with other's dramas.So much so that we have become reclusive.

The days when we don't have to leave our home are cherished days. And even though we make a point to get dressed each morning, we are not adverse to having a couple of Pajama Days occasionally.

In short, we are wearing out. Physically, mentally and emotionally, we are spent. I can say that we aren't spiritually spent because we pray and worship a lot. It does help.

I have been posting a little spasmodically because of excessive fatigue, and I have decided that from tomorrow onward, I will post in a diary form recording bloods, blood pressure and so on. Plus anything else the LORD puts on my heart.

Today is Sunday and I have just done the least I can do to keep our home manageable. With the fatigue being bad and no spoons, I took a nana nap and it turned into a grandma nap. Three hours.

But I woke up and felt a bit better and managed to fold some clothes that had spent their new clean life in the laundry basket...

Anyway, I had a comforting thought which I will share: there's an old saying that the aged say... "I am so ripe that I am falling off the vine!" Not very comforting. 

But the next thought was comforting- physically, yes I am- but spiritually, not so. Instead I am grafted into the Vine- Jesus and He sustains me and gets me through this painful path called life...

So, with His help, I am definitely not falling off the vine! 

Are you a senior Aussie?

 

These days groceries have gone through the ceiling and it is very hard to be able to afford meat and fresh fruits and vegetables.

When you are chronically ill and disabled, cooking becomes a real chore and meals can become less tasty and nutritious.

I was feeling  all this when my Aged Home Care Package was reactivated and it was with sincere gratitude that I was able to access Lite N Easy Meals. 

They are created by dietitians and cooked by chefs and are very tasty. My Aged Care Package pays 70% of the cost and I can order 28 meals every two weeks- or more often if desired.

If you are a senior in Australia, check out your eligibility for you Aged Care Package. You will be glad you did.

When the spoons are gone forever

 

The Australian government allocates $53,000 pa in a care plan to try to keep aging people in  their own home if possible. It works out cheaper than putting them into a nursing home. I am so grateful to live here where there's help because aging is no fun!

A lot of oldies here have to sell their home to get into a nursing home and/or have their aged pensions garnished. Chris and I have absolutely no assets to garnish and the Aged Care Package here is means tested.  

We rely on the Aged pension and that is all we have... so we qualified. 

We have worked hard in our lifetime, managed our homes, worked outside the home, brought up our children and possibly, even grandchildren. Now we find either that our spouse has passed away or is also suffering the effects of old age and cannot help up either.

There's no shame in asking for help. Even Sacrificial Home Keepers eventually run out of spoons and they are gone forever.

Help until He comes

Today was a busy day in that I was organising aged care help for Chris and I ... we arent coping all that well... lots of phone calls that had me on hold for at least an hour each 

After nearly a whole day on the phone, I am happy to report that we were approved for help. Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

I am hoping that God takes us Home soon. That is the best thing to dwell on. But meanwhile, while we wait, my house could do with a deep clean, our toenails are feral and we need them properly done. We cant take a bath and we help each other shower but a grip bar and telephone type shower have been promised to us under home maintenance, and that would stop the suffocation feeling of water pouring over our head when we can't breathe at the best of times.. 

We cant drive most times and we will need transport for a personal consultation with our doctor and the help they offer is needed now.  Nothing to do with lack of faith or not watching- but we have to be practical. 

Heart failure is a beast that stalks us both and is a progressive disease. Peripheral neuropathy in our feet and legs is a constant pain that stops sleep.  A physiotherapist may be able to help or offer exercises to alleviate it.. all things that need attention now. 

Including last but not least, changed bed linen that can be done without banging gnarled fingers and hands... and while we look with anticipation and longing to be Home, the daily necessities of life are calling. 

We rely on God to help us and are grateful that He has blessed us with the help we need...until He comes. Our life style is always if the LORD wills.... we consider ourselves blessed that we are eligible for the help that's come our way, until He comes! God willing, it will be soon. But if not, we will be accepting help to keep going until He comes.

 © Glenys Robyn Hicks

" So teach [us] to number our days, that we may apply [our] hearts unto wisdom" Psalm 90:12

Time on the phone paid off

After nearly a whole day on the phone, I am happy to report that we were approved for help. 

Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. 

Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

Once a year someone will come and wash our windows for us. The is all part of the Australian Government's plan to keep seniors in their own home instead of a nursing home.

I had to access three different goverment bodies today via phone with a waiting time of an hour or more, but with the ability to be approved so quickly and for the blessing it will be, the time on  the phone paid off.

 

It still is that for me!

 

Yep, it's still Safeway for me!  With fibromyalgia brain fog and old age, tell me the new name of a place or person I knew, and it is lost forever... they will forever be the name I first called them!

So I had a phone consult today and the doctor wants to wean me off prednisolone after only four days.. it hasnt really done it's job quite yet, so I am going to spin it out for a few more days ...

Today I have washed some minkie blankets off our beds, ran and then emptied the Roombas, cleaned the toilets and ordered online medicines and groceries.I  did some rounds of crochet in between tasks..

Chris loves bangers and mash so that's what I will be doing for tea tonight..

The Prednisolone fills me with fake energy, but I don't care... I will milk this Polymyalgia rheumatica situation for all it's worth!  I know I won't be long on the meds so I may as well turn the antsy feelings for my good...and get the benefit of some pseudo spoons!  

For those who don't know... in Australia Safeway Supermarkets took on the name Woolworths many moons ago: but as I said, it still is that for me!

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.

The only nice thing about it

So we went to the doctor yesterday to get our results from blood tests taken a few days ago. My blood pressure was 140/90 which was slightly better than last time, but still high.

He asked was anything bothering me and I had to tell him I am worried about Chris. Both of us have heart failure, high blood pressure, diabetes and cellulitis plus I have fibromyalgia. 

We both have pitting oedema on our feet and legs and the fatigue that comes from obesity and feeling sick. Dressing and showering is shared in that we help each other and because of exhaustion from showering, we shower every second day, taking opposite days. That way, we can help each other.

Our love language is touch in the form of massaging each other's feet and legs and our speech revolves around spoons and how much sugar is in everything that passes our lips.

We rarely leave home any more except for the doctor or chemist and our rubbish bins go out more than us. The highlight of our day is to discover we don't have any appointments or need a blood test. We are extremely relieved to know we can just stay home and have a PJ day.

It is unusual to call on us and not find at least one of us having a nana nap, particularly if we haven't slept well the night before.

When massaging Chris's feet or watching him sleep upright so that he doesn't feel like he's drowning in his fluid, I become anxious about how ill he looks and I fret that I will lose him.

I can't bear to think of that and when I do, I have to give it to the LORD in prayer and trust that He will grant us more time together.

All this angst does nothing to alleviate my fibromyalgia pain or help me get over a flare and I find myself taking mild pain relief every 6 hours. As the doctor advised.

Our home is able to be company ready in half an hour as it is basically tidy all the time. True, there may be slippers in the lounge or a cup on the table, but this can easily be fixed. I just close our bedroom doors to hide the permanently clean but unmade beds.

We love our home as we feel it nurtures us and even though we only may be gone a few hours when we have to go out, we find we are really looking forward to coming home again.

When we were engaged, we agreed that it would be nice to grow old together and we have. Twenty-five years later, it isn't so nice. But thank goodness we have each other and that's the only nice thing about it.

Take me as I am

Over the course of a 57 year old friendship, I have always made sure my house was clean and presentable when Ann came.  Not that she was judging me at all- it was just how I rolled.

Once fibromyalgia came to overshadow me and steal my spoons over the last 22 years, she and I made a pact that we would visit each other no matter what state our home was in. Or else it would never happen.

As we grew older, we realised that things like neat houses sometimes were very scarce, and we agreed that visiting each other was too important to us than worrying about our homes' presentation. So we chose to each be hospitable and not worry about the extraneous.

Since developing fibromyalgia, I have had to rethink my own standards of cleanliness. My standards now are in order of priority and are non negotiable:

A clean body. 

Clean bed.

Clean clothes.

Clean dishes and kitchen.

Clean toilet and bathroom.

With no spoons during most days of a flare, it has been imperative that I reassess what's truly important in my life. God, family and friends were an easy choice. But not just any family and friends, I prefer kind,  like-minded people like Ann, who just takes me as I am.

Painted in to a corner

So we visited our doctor last week and he asked us if we wanted the Covid 19 vaccine. With both of us with weak hearts, diabetic and obese, plus being older he told us we should consider it.

Well, we have considered it. With ordinary flu vaccines, both of us had a really bad reaction to it, and we both swore we wouldn't have another one. So we declined.

We pointed this out to him, plus the added problem with my blood being sticky and my propensity to make clots, it seems too risky. Even with Clopidogrel and aspirin blood thinners which I am on for life.

The doctor said if I wanted it that he would consult with my specialist who deals with my antiphospholipid syndrome. When I told him I didn't have one, he said that he would have to refer me to one and take it from there.

I asked if he was planning to have the vaccine and he said he and all in his clinic had already had it. I asked him which one. He replied AstraZeneca. 

Now AstraZeneca has been ceased in some European countries because it seems to be linked to many cases of blood clots.

As an older person, I would be given AstraZeneca here in Australia to leave the other vaccines for those under 50 who may be at greater risk of blood clots. 

With severe muscle pain already from fibromyalgia, I can do without feeling even worse. Especially for a disease that has a 98% survival rate if you are unlucky enough to catch it in the first place.

So we declined and the doctor was OK with that. For the moment. Because I can foresee in the near future that there will be more pressure on people to be vaccinated, especially as more vaccines become available.

I will never agree to being vaccinated and it's OK now, but with a muted message on Twitter from our Prime Minister that "certain things will have to be done to ensure all are vaccinated" and revealing that even Australian citizens may not be able to return to Australia if unvaccinated, the die is cast for some coersion in complying.

We will be standing our ground on this experimental vaccine, but we feel that it's only a matter of time before we are ordered to comply and are painted in to a corner.

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? 

The only blessing about getting old

 

It's Tuesday morning here. I have our cleaning lady coming at ten. Before she gets here, I want to tidy the house and get a load of washing done. 

She usually vacuums and mops the floors and cleans the bathroom for me. As an aged pensioner, the government has certain home care packages for the aged and I have been approved for one. I do pay a fee for her services, but it is subsidised through the government Aged Care Plan. 

I consider myself blessed beyond measure. Those jobs are ones I can no longer do and as Chris is quite unwell himself, I don't even ask him to attempt to do them. 

Having home help is not a matter of being lazy- with fibromyalgia, heart and spinal issues and arthritis, there are a lot of tasks I just cannot do anymore. 

As I have written before, I am grateful for all my labour saving devices and the Home Package Care Plan I qualified for.

I think it's the only blessing about getting old...

Smelling the roses!

 

The last few weeks have been full of drama and it has seen my body collapsing with the mother of all fibromyalgia flares and a (non Covid) viral infection. Most things have been resolved and I have my peace back again. 

I have taken back control of my house in which I had fallen down during my illness, and I have had help from a cleaner from my aged care package. 

A lot of our Corona limits have been lifted and I have been able to see my family. That has helped. More things will be lifted next Sunday and it looks hopeful that we will be able to see family at Christmas.

Chris is recovering well from his surgery and no longer needs special dressing of his wound. In fact, a bandaid suffices now. I am so cheered that he is well. I hate it when he is unwell. 

The days are getting hotter with tomorrow set to be 33deg C but I am not concerned since we aren't going outside and we have air conditioners now.

We saw the doctor today for routine blood results and my blood pressure check as it was high last week. With giving my situation to the LORD and regaining my peace, it was 134/80 and the doctor was very pleased.

We have found a couple of Christian networks to watch wholesome movies and they have been very uplifting. One is New Faith Network for which I pay about $8AUD a month and the other is free for 14 days then $8AUD a month-  ACCTV.net from Australia. 

Chris and I sit of an evening and watch TV together and it all helps to bring stress levels down as well as blood pressure.

We are enjoying our back garden with a return of the prolific bird life that is so colourful. They have returned from their migration north to beat the winter and they are a joy to watch as they come down for the seed and food we leave for them.

Life can be so difficult, but can also be so wonderful: a great deal of the wonder of it all is to take time in smelling the roses! 

Making holiday plans

 

After nine months of lockdown here in Victoria, at last some restrictions have been lifted, paving the way for families to get to together for Christmas and New Year.

Gone are the endless days of watching movies and becoming totally indolent because of boredom and depression. We can now make plans for the holidays.

It was horrid being in a state of limbo due to the Government's tight rein on us travelling because of Covid 19. We didn't know what would be happening this year, but hopefully now we will be able to reconnect with family.

It will be good to travel without being pulled over by the police or defence officers. Shopping for food and presents will be fun, even though we still will have to wear a mask and practise social distancing.

This doesn't really worry me as I do all my gift buying and food online, due to fibromyalgia and heart problems. But it will be great to know that we can actually visit our family instead of posting presents. 

My aged care home help lady has been coming and it is such a relief. I have the place tidy for her and she said our place is fine. Apparently some people won't do anything in their house at all.

I have had Chris receiving hospital in the home care daily and last Friday he was discharged because the wound has granulated sufficiently that it doesn't need packing anymore.

We are experiencing quite changeable weather and my fibromyalgia is off the charts. Along with the chronic fatigue a flare brings.

I am looking for Christmas gifts online and am planning my Christmas dinner menu. We are so glad that at last there is a lessening of active Covid cases here in Victoria and it looks like Christmas will be a time to enjoy with family. 

I am rejoicing and feel alive again, now that I will see my grandchildren and other family and I will take great pleasure in making holiday plans.

The only perk of growing old.

 

Last Tuesday there was a knock at the door. We weren't expecing anyone, but were delighted to see a lady employed by the aged care. She was reporting for duty.

Seeing that I hadn't heard anything about a new cleaner since I dismissed the last cleaner, it was a very welcome surprise. 

She stayed for two hours and did a really good job.

Having a clean house lifted my spirits considerably. She will be coming weekly until December, then fortnightly.

I am so grateful for her help and my Aged Care Package entitlement is the only perk of growing old.

Play it in your own time!

 

As we shared before, I am supposed to be getting help in cleaning our home. But it has turned into a mess and I have fallen in the cracks. There was a woman who came for three weeks, but she was woefully indolent and a liar.

We are paying a co-payment to have her clean for two hours a week and sadly she wasn't worth the money.

For the first half hour she chatted and I had to bring her gently back to why she was here. Then she bustled around and "cleaned" stuff. 

When I say "cleaned" I am being generous. We could see no difference in our home cleanliness even after she was gone.

Chris was ill and in our bed, so I said to her that she needn't worry about changing it this visit. I asked her to pay particular care in the bathroom as it was looking like it needed a good clean. Particularly the bath. And I wanted the vinyl floors washed.

With half an hour to go, she came out and sat on the living room carpet in front of our beautiful backyard and watched the birds and played Candy Crush on her phone.

Knowing that she hadn't done much I asked her if she had cleaned the bathroom and toilet. She nearly shook her head off in affirmation. I had my doubts though.

I asked her if she had mopped the floors and she said "You don't really want them washed today, do you? They still look clean!" 

When her knock off time came, I begrudgingly signed the paperwork, confirming she had been.

Suspicious, I went into the bathroom. There was my hair still in the bath, the cap of the shampoo on the floor of the shower and Chris's whiskers in the hand basin. There was a cotton bud on the floor.

I took a quick look at the toilet too. How can I put this delicately? I can't. There was grunge still at the back of it. So without changing our bed or mopping the floors or doing the bathroom and toilet, she spent a total of one hour vacuuming our very small home. I was angry. I hate being lied to.

That afternoon, I rang my aged home care co-ordinator and told her what had happened. If they couldn't replace her, I would prefer none. I didn't want her back in my house.

So five weeks passed and I heard nothing. Turns out the home care case manager for me has been off for the last three weeks and I have fallen between the cracks.

So when I get someone to help me is anyone's guess. And for me, it can't come sooner. Not that our home looks like a burgler has ransacked it. I keep it tidy and it is always decluttered.

But my home is dirty. As any homemaker will tell you- it effects how you feel. And physically with the fibromyalgia flare brought on by driving a lot last week, it sucks even more.

There's not much I can do but wait again and hope they send me someone who has a decent work ethic.

Though from what I have heard, none of them does a really good job.

But as Sacrificial HomeKeepers know, we have to ditch perfectionism and accept that anything is better than nothing. Except the home carer who used our money to play Candy Crush in my living room. 

She should play it in  her own time!

He who is slothful in his work is a brother to him who is a great destroyer. Proverbs 31:9

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! 

Help is on the way!

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

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

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

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

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

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

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