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! 

I can hardly wait! Again!

                          

Do you remember reading that I was disappointed because the bath lift chair I bought could not fit under the bath tap? I had to sell it..

Well today my Occupational Therapist from my Aged Care Package came for a visit to our new home and brought the mobility gentleman with her. He had a lift chair with him and we did a dry run... and it went very well.

The bathroom tap did not get caught in my leg and I was able to lower the seat right to the bottom of  the bath. One has been ordered for me and I am very happy.

I am also happy because I have been told that I can get a mobility scooter in the near future which is cause for celebration... very happy to be getting one, but more excited about the bath lift...

As I said a couple of years ago, I can hardly wait! 

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...

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! 

Enjoy being at home.

The last few days have seen me taking a renewed interest in cooking and house management.. it's been a time of feeling incredibly blessed.

Our home nurtures us so much. It is so comforting to be here, away from the hustle and bustle of life and just snuggling in  here. 

I have just turned 71 and I can honestly say that contentment and joy have caught me by surprise! 

The longings for adventure and new experiences has waned and I am truly content just following my basic routines.

Fibromyalgia and heart problems dictate my life somewhat and even though spoons are scarce, I still try to keep my home well and I even try to bake bread... this is where spoons and pacing comes to the fore.

In an effort to keep feeling peace in our home, I have stopped viewing news videos regarding the end days and I can say it has worked.

As I work on my computer, I have scriptures or some form of worship music playing. 

I am waiting on the LORD to come for us and while I wait, I keep guard on what exactly comes into our home.

I pray a lot that God will keep me in perfect peace because as the wife in our home, my moods and attitudes shape not only my day, but Chris's

Peace is the first thing to go and it's not necessarily from the words we speak. Attitudes speak volumes.

Our home can be a haven from the world for us and we should try to make it a clean and comfortable place that shields us from the world...  Our home is indeed our haven. Enjoy being at home.

I am already there!

   

In a few days I will be turning 71. It's been a bumpy ride punctuated with bursts of hard work in raising 5 children punctuated with the misery of chronic illness adding to the joy.

I think it's normal to feel tired in your seventies, but when one has fibromyalgia, polymyalgia, heart disease, spinal problems, diabetes and pulmonary hypertension as constant companions, well- it makes me tired just thinking of doing the smallest task.

Lately I have been reflecting on my life and trying to simplify it even more than it is now. And I have done a few things to avoid feeling false guilt and perfectionism.

I have unfollowed all my online groups for cooking, housework and household tips and decluttering. I still do these things, but at a snail's pace. I don't have to add to my perfectionism by fueling it.

I have also unfollowed all my feeds for pregnancy, childbirth and breastfeeding as it tends to make me nostalgic for something that is no longer a part of my life.

Similarly, I have gotten rid of household check lists and calenders about homemaking routines. They never work for me as I am so often out of spoons due mainly to fibromyalgia flares.

All my married life I have written out meal menus but now that Chris is very often not hungry or at least is very picky, I must cook to adapt to his fancies for dining thus invalidating my menu plan..

Always an Aldi girl, I now shop for groceries totally online, visit my doctor via phone consult, order  my prescriptions online and pay all my bills online.  

I rarely leave the house these days. Everything is slowing down for me these days and I need it to stay that way. 

Even with help once a fortnight for housecleaning, I find just running the home during the two weeks between cleans physically taxing. 

As I said, I think it's OK to slow down when you age...and I am no longer like the fairy godmother... managing my home easily and without much effort. 

I just have to accept that like the fairy godmother I am not getting old: I am already there! 

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

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.