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!

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! 

It's not about how fast we spin our wheel

Whether you have the flu or a cold or suffer like I do from fibromyalgia, you will have days where your body forces you to rest simply because you can't do anything else.

But that doesn't mean that resting will make it better. Nor does it guarantee that you will gather more spoons to use when you rise up from your sickbed.

When you are chronically ill, you don't get better and rest definitely doesn't leave you feeling refreshed and full of energy.

The most rest can do for us is give us a temporary respite from forcing ourselves way beyond  our comfort zone to serve our family.

Needing to rest can make those who don't understand chronic illness to make us become the victim of nasty retorts stating that we are lazy and putting it on in order to take to our bed. 

Being that fibromyalgia is one of many invisible illnesses, we are often maligned as malingers and the angst that this creates can cause us to become depressed as well as angry.

We didn't ask to be sick and most of us in fact push ourselves way beyond our comfort zone to prove to ourselves and others that we are not lazy.

I think as fibromyalgia is often a prolonged illness that we would do well to take thoughts of others directed at us to be taken into the captivity of Christ Who doesn't condemn us but Who loves us at all times. 

He understands and doesn't condemn us. We have to take His Word that He loves us as we are.

We need to learn to switch off from those who condemn and criticise us for taking frequent breaks and nana naps. We know we are doing the best we can and our worth is not about how fast we spin our wheel.

 

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

A boring home life

It's Tuesday morning here. I have just finished putting the groceries I got online away. It's so convenient for Chris and I seeing as we both are unwell

I have done a  load of washing and am thinking about doing some lunch. Toasted cheese and tomato sangers sounds good and easy.  

My kitchen needs to be cleaned but I am out of spoons as I didn't sleep well last night. The weather is changing as it's autumn here and we can experience all seasons in one day. It plays havoc with my fibromyalgia. It's making me feel miserable.

I am thinking of taking a nana nap before I do the kitchen. But before that I will take some Panadol Osteo   to help relieve my fibro pain. Pacing and resting are not an option with fibromyalgia: it's a necessity. 

After I clean the kitchen I will cook chow mein and rice for dinner and if I have enough spoons I will fold the day's clean clothes and put them away.

It's a boring day here and I am glad. When you think of what's happening in the world, I can truly gratefully say that God has blessed me with a good but boring home life! 

Russian roulette

 

I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

It's a game of Russian roulette to take a gamble of feeling better after a nana nap. Waking up can go either way.

Are you willing to gamble reliving morning muscle pain again? Lotsa luck!

I'm a plain Jane!

Each morning when I get dressed, I wonder what the day will bring.  I have learned over the course of time that those days when I have a pyjama day, something crops up and I have to don days clothes in a hurry. So I try to get dressed early in the morning.

I don't worry with makeup and just brush my hair. I have dresses that have sleeves and some that don't. So I can dress according to the weather. Or according to my rapid body temperature. Thanks to fibromyalgia, my thermostat's broken.

Not a great fan of jewellery, I just wear my wedding ring and usually I just wear some stud earrings of a matching colour as my dress. Usually I am home, so I have some pretty bibbed aprons that I match up with the colour of the day.

Most times because of foot swelling, I go around the house barefoot, but I do have some black Skechers I wear when I go out. I don't wear socks or stockings. 

These clothes work well for me- tidy, plain and modest and easy to wear and wash. No ironing. 

I would love to have long hair but I lost a lot of it due to illness and now I find it easier on my arms to keep it short. My polymyalgia won't allow me to raise  my arms, so my hair's short.  I wear it in a pixi style which is like my clothes, easy to manage.

I would say my style is plain but tidy. And when you are chronically ill and in pain, it is enough. 

It's a good job today's clothing is not reliant on stays and corsets and many buttons and ruffles, because I just couldn't stand long enough to get it all right and I just don't have the patience. Also, I need to breathe freely and I know I couldn't with a corset! 

I really aren't that great to look at, but I look feminine and that and clean, tidy and modest is OK. I guess you could call me a plain Jane! 

A permanent thing

 

So I haven't been feeling the love for weeks now. In fact I seem to be enduring the mother of all flares with slight variations on the depth of the flare.

My polymyalgia rheumatica seems to be going but the fibromyalgia pains and fatigue and brain fog are still draining me with their presence.

I wonder when the fibromyalgia pains will abate like my PMR. But they don't. Ever.

So I was reading over the blog trying to recall how long this current flare has been going on, and it was no surprise that it has come hot on the heels of the one before that. In fact, I don't think it ever went.

I got to thinking that maybe they aren't true flares. Maybe it's one continual run of severe pain with only a slightly better day thrown in here and there. But no real breakthrough. It makes sense.

It makes sense that's why I constantly start each day in severe pain and enjoy no spoons to think of because I am in a major flare. One that never goes away.

The only difference between "flares" is that I may have managed to chuck some washing in the machine or put a couple of appliances back where they belong. So I consider myself not flaring.

The only time I get any relief is when Chris rubs my sore feet- and fibromyalgia also is to blame for that, vying with peripheral neuropathy from my diabetes.  I usually fall asleep for a little while.

Sleeping brings no real relief as I wake myself in pain trying to move in my bed. It's a viscious cycle.

I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

If I did manage to get comfortable I think bed could easily become a permanent thing- along with my so called fibromyalgia flares. Because they definitely are for me, a permanent thing...