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!

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...

Lovely stuff

As a long time member of the Fibromyalgia Club, I usually wake feeling unrefreshed and aching all over. I have never been hit by a bus or train, but I would imagine that early morning stiff feeling would be akin to it.

Almost in a trance, I find my way to my kettle and turn it on. I grab the milk out of the fridge and proceed to take my blood to determine how much sugar I have in my diabetic old body. Like my weight, there is always too much of it.

Whilst the bread is toasting, I check my diary to see if there's anything we have to attend to or go to. With fibro fog my second nature now, I write everything down so that I don't forget it. In spite of aches and no spoons, if I don't have to leave the house today, I may do a little soft shoe shuffle. No wait- not a shoe shuffle- a slipper shuffle.

Really, it's sad when you come to think of it. A day with no appointments or shopping makes my day. I don't even care that the bins go out more than I do. 

Pyjama days are splendid days and I look forward to any excuse during a fibro flare to allow me to lounge around in my nightie and dressing gown. On days like that, it is enough that I brush my teeth and wash my hands. Forget the trauma of taking a shower. That's a good day job!

With high blood readings lately, I have had to be strict with limiting sugars, but because I hate my tea with none or worse still, with artificial sweeteners, I only allow myself one treat: a cup of white tea, one teaspoon of sugar. Stirred not shaken.

My first cup of tea in the morning is the one I enjoy the most, and I find I can limit tea sweetening during the day. Give me the joy of a refreshing, uplifting *sweetened* cuppa in the morning and I will be a reasonably happy little diabetic warrior the rest of the day.

Most people need a coffee in the morning, but for me, it's tea all the way. I can't live a happy life without my morning cup of tea with milk and one: it truly is lovely stuff.

 

The Queen of List Making

So I did it again! Instead of cleaning up after dinner, I went to bed with dishes in the sink. I hate when I do that!

I mean, with fibromyalgia robbing me of a good restful sleep, the mornings are hard enough to face. Having a dirty kitchen to wake up to is the pits!

Most would think that it's just laziness, but by the time I have cooked dinner my spoons are almost gone. Yes gone! I am so done in by the end of the day that even lifting my arms up to put my nightie over them creates pain.

Oh, yes, I make lists and read motivational blogs and You tubes, but to no avail. I am the Queen of List Making. Yet my limited spoons dictate that I do very little and I am left with ashes in my mouth.

I know I said before that I have been keeping busy and that's true, but I now have a rebound fibro flare and coupled with our autumn cold snap with rain, I am in a lot of pain.

You would think that I would have worked out this fibromyalgia lurk after twenty years. And for the most part although I hate it, I have learned to exist with fibro without feeling false guilt that leads to depression.

Most days I accept my disability, but deep inside is a perfectionist screaming to get out! On days like our current lockdown days, due to Rona, I try to nest and I overextend my limits. Hello, Fibro Flare!

I am grateful to my husband Chris. He is an mild mannered man who is happy with how I do manage to keep our nest. He and most people who come to visit- well in better days obviously- are happy with the state of our home.

It must be that I am my own worst enemy: trying to do the work of a much younger healthier self: everything in its place and a place for everything. But always straining, never achieving thanks to Fibromyalgia.  I need to accept what is and hang up my crown as the Queen of List Making.

Today I am doing just a few things:

1. Cooking a chow mein in the slow cooker
2. Doing those dishes from last night
3. Giving in to the latest flare and taking a nana nap

Doing it my way!

So thanks to fibromyalgia making my life from day to day so unpredictable, I can't keep to a homemaking cleaning routine.

I simply don't know how each day is going to be until I wake up. It's unpredictable. Only in the morning (which usually is not a good time for me), will I know if I have any spoons (energy) or not. 

A lot of course depends on whether I was able to sleep well or not. Because most of the time I toss and turn and don't get much relief from pain even in sleep, I wake up feeling like I have been hit by a truck.

So in the 51 years of being a housewife, I have learned a trick or two about getting it done. And by getting it done, I don't mean perfectly: I mean good enough to keep us comfortable and healthy.

Perfectionism went out the window 22 years ago when Fibromyalgia joined the 'Ailments Club' along with life time members- Angina, Arthritis, Asthma, Ankylosing Spondylitis, Spinal Canal Stenosis, Diabetes 2, Hole in Heart, Polymyalgia Rheumatica, Depression and lastly but by no means least, a torn Meniscus in the left knee. Oh yeah: and Heel Spurs. 

But I digress: I have learned a few tricks along the way for that rare day I just may have some spoons.

Here's a few tricks I have found along the way to help with housework.  You will see it's not very orthodox, but's it's effective and I like doing it my way! 

Weighing up the spoons!

I am overjoyed to wake with some spoons today! I have been in this fibromyalgia flare so long that I have forgotten what energy feels like. 

To cope with the residual muscle pain, I have taken a couple of paracetamol with my other tablets this morning. 

I am sitting trying to work out how to utilise my spoons skilfully. I know if I overdo it, I will be back in a flare tomorrow. There's much I would like to do, but I think I will keep it simple to avoid a rebound flareup.

On my to do list today:

1. Follow Wednesday's List
2. Get a few groceries and go to the post office
3. Cook some devilled sausages with vegetables and mashed potato for dinner
4. Have a bath in the evening if I have enough spoons left

If I can get most of this done, I will be happy. It's all about balance and weighing up the spoons!

Are there any spoons out there?

So it's morning and with it comes the stiffness, the muscle pain and tiredness that belies the fact that I actually slept for nine hours. It sure doesn't feel like I slept at all.

I have to go to the chemist this morning as I am out of blood pressure tablets. As I have been home all week, mostly in bed, I will enjoy being out of the house a bit. But I know I will be glad when I get back home as well. Fibromyalgia makes you like that.

Accepting that I will be exhausted by just going to the chemist seems laughable to people who are not ill: but to us Sacrificial Home Keepers, it's a reality and part of our new normal. So I will take this necessary trip out today with gladness that I am getting out of the house but with the knowledge that I will probably need to go to bed for a bit afterwards.

Before I go to the chemist, which is a twenty minute drive from home, I will be cooking the evening meal in my slow cooker so that it is one less thing to worry about when I need to rest later on.

So once again, my to do list will be very simple:

1. Follow Saturday's List
2. Cook some sweet curry sausages with rice in the slow cooker
3. Go to chemist
4. Fill our tablet dispenser for the week

We will have to see if I can get it all done. If not, this picture will be of me searching for any spoons out there! 

Done and dusted

So as you know, I spent nearly all of yesterday in bed, recovering from a fibromyalgia flare. When I crawled back to bed last night, I fell asleep dreaming of waking with spoons and planning what I would do in the morning.

When I woke up this morning, I felt just like this picture portrays: today is going to be more of the same.

So on today's to do list is:

1. Rest and medication
2. Prepare a salad to go with tonight's frozen lasagna

I know if I don't rest up that this flare will drag on. My home needs some attention, but I can hardly lift my head.  I want this flare to be like my house: done and dusted.

House of happiness

We love our new home, but it sure gets cold up here. This morning we woke to 10C and the windows were running inside. Thank goodness we have a large reverse cycle air conditioner/heater.

Today I plan to vacuum and wash the floors, dust and clean the bath and toilet. This will have to be after the usual morning chores. God willing, I will have enough spoons.

On today's to do list is:

1. Clean the kitchen
2. Make our bed
3. Do a couple of loads of washing
4. Dust
5. Vaccuum and wash the floors
6. Make a slow cooker bolognaise sauce for spaghetti tonight.

I have chucked out some leftover cake for the birds. It is like an airport here this morning. 

I am planning on getting some plants in baskets to hang along the front verandah. Currently, I am doing a google search to know which ones would be not only pretty, but hardy. Our house is a house of happiness and the plants can reflect that...  

You can't have one without the other!

Having to pace myself yesterday, I woke with some spoons which was just as well as we had to take our daughter to the Alfred Hospital in Melbourne. She is a survivor of APML leukaemia and she needed her six monthly blood tests in preparation for her visit with her haematologist next month.

As we had to be in Melbourne early, we had an early start from home. We virtually just had breakfast, dressed and ran out the door. So no lists or housework plans were made. That will have to be tomorrow.

The trip was 400kms all told and it was very tiring. For all of us. We all had a nana nap when we got home.  We got some fish and chips on the way home as we just wanted to eat and crash.

In this picture of the Alfred, you can see the room I was in when I had my 3 stents put in in 2007. It's the third level, last window on the right. Chris and I would watch the helicopters come in on the heliport just in front of the hospital. It is built over the road and leads directly to the Trauma Centre.

So, housework wise, it was a dud of a day, but we were able to help our daughter with her cancer journey, fulfilling our promise to her the day she was diagnosed. 

In chronic illness you sometimes have to push yourself to live the life you want. It isn't easy: in fact it takes a lot of determination and prayer.  Lots of both. I don't think you can have one without the other!

Flat out in bed

So today is going to be busy for me. First thing this morning a technician from Telstra  is coming to install the NBN for us. Hopefully our connection will be faster.

When that's done, I have to go to the Post Office and request another invoice to renew our post office box. They have overcharged us on the invoice. As the post man doesn't home deliver here due to us living in a tiny country township, we must all have a PO Box. They charged us as having a mail delivery but wanting a PO Box. A lot more expensive! 

I have also to change our bed and refill the weekly pill container for our medications. I will be taking note what medications we need a prescription or a refill for at the chemist,  for the doctors' visit tomorrow.

So todays' list of to do's looks like this:

1. Change our bed
2. Finish cleaning the kitchen
3. Refill the medications
4. Do some washing but using the dryer: it is going to rain for the next 3 days
5. Sweep the vinyl floors
6. Bake a cake for afternoon tea
7. Dinner for tonight is quiche with vegies.

This is a pretty full on day for me. I will have to pace myself so as not to prolong my fibromyalgia flare, or instead of being busy flat out like a lizard drinking, I will just be flat out- in bed.

What I wouldn't give for a good sleep

Last night was a fizzer regarding sleeping. No matter how I positioned myself, sleep eluded me most of the night. I have woken up this morning so sore and tired that I don't know what to do with myself.

From twenty odd years of suffering from fibromyalgia, I know that today is going to be a wipe out. So I will be pacing myself and only doing the bare minimum of chores.

Yesterday I felt like this, but we had waited a week to see a new doctor and we had to go see him. He was good and seems to know his stuff. We have a few baseline blood tests to get done before we see him again next week.

We are into cooler weather with a top of 28C predicted. I have washed two loads of clothes and am too tired to hang it out. Sometimes you have to compromise when you have chronic illness. Sometimes you win, most time it does! 

I shopped online for groceries yesterday: the Woolworths delivery man is due soon... I am saving my few spoons to put the shopping away and mark it off the shopping list as received...

Things on my to do list today:

1. Put the food away
2. Cook my homemade pasta sauce in the slow cooker for spaghetti bolognaise tonight
3. Rest

That will have to do for today as I am having trouble keeping awake. What I wouldn't give for a good sleep! 

Scarce as hens' teeth!

It is quite cold here today: 8C! By midday we should be hitting 24C which is quite pleasant. I have the reverse cycle air con set on 22C which is quite comfortable.  Xena our little white cat got up, used her tray, had some kibbles and went back to bed. Before I came out to the study, she was seen nestled next to Chris under the doona. So when she does that, you know it's cold!

My plans for today are

1. Catch up on last night's dishes
2. Do some washing
3. Go to the doctor and chemist
4. Do some grocery shopping
5. Cook sausages, veg and mashed sweet potato and potato

Fibromyalgia has me aching everywhere but there's no time to go to bed.  Today we are going to see a new doctor here. We only know his name but haven't seen him yet. Our little township has a drought on doctors with the average wait a week.  With all of our many illnesses, we are praying that this guy knows his stuff. But even so, beggars can't be choosers: doctors in the country are scarce as hens' teeth!

What a drenching!

There's nothing nicer than being in bed listening to the rain on a tin roof. Especially if you don't have to go out in it...

Last night and this morning we had heavy rains and more is expected today. Next week we are going to be in the middle 20C's or 68F's. With all the bushfires around us, it is much needed and prayed for.

I took this picture from our back door just after I fed some bread to the birds that frequent our garden. I love the smell of the rain! We are getting some relief from the heat with a top temperature forecast for 21C or 69.8F. 

It was my plan to go to church this morning, but with all the storm activity yesterday my fibromyalgia's flaring and I honestly can't make it. Hopefully, next Sunday will be better.

Usually, I listen to the Bible on You Tube and worship and rest at home when I can't go. Which is often, unfortunately. 

I will be hanging up the clothes I took out to wear there this morning. Later on I will cook some curried sausages in the slow cooker, which is my favourite way of cooking when I am in a flare.

There are a few dishes in the sink soaking in hot soapy water as per Sylvia's Sunday List. I will attend to them later on after I have had a rest. 

It isn't ideal that I am seeking to go back to bed so early in the day, but such is the life of a chronically ill person. I no longer feel any false guilt over it like I did in the early days of finding out what my new normal would be.  I can only get through this flare by resting...

So list of to do's today:

1. Hang up clothes
2. Set slow cooker going with sausages for dinner
3. Rest

And last but not least, I will be rejoicing as more rain falls giving our parched land a drenching! 

First we have tea

We had a very fitful sleep last night due to the temperatures being so high yesterday. Our reverse cycle air conditioner just doesn't make it up to the front of the house and our bedroom is right at the front, faces east and catches the sun all day. It was like an oven in our room with the temp being 23C all night. Our fan only blew hot air around....

It is supposed to be 30C today with thunder storms later. We always have our Emergency phone app on to advise us on fire activity as we live in the country. Last year Chris's son, who lives near us, had to evacuate his family because of fires and this is something we are prepared for. 

In the front guest room we have our important documents, spare medicines and some clothing and our photos on USB  disk. They are easy to grab in case we get the evacuation call. With high fire danger today and lightning strikes a possibility, we have our fire plan in place. Yes, it's firmly in place,  along with our little white cat, Xena's cat cage. Just in case...

I am currently listening to the Bible on You Tube and it is great for times when I am in a fibromyalgia flare and can't take in what I am reading. This is my preferred method of quiet time on days like today when my fibro is bad and I am lacking sleep and spoons. 

So because of lack of spoons and much heat, we plan to stay home today. So far, I have showered, dressed and taken my medications. I have a few things planned for today:

1. I need to fold and put away three loads of washing.
2. I want to make a lamb stew in the slow cooker for dinner (so as not to heat up the kitchen)
3. I want to resume following FlyLady by jumping in wherever the zone is for today.

I usually use FlyLady and Sylvia Britton's Lists for chronically ill women depending on how I feel each day.  I use the List for the day, then I may follow FlyLady's zone for 15mins. Today I am doing 15 minutes of cleaning in Zone 1 in FlyLady.

If I get these three things done today, it will be good. I will just cross off those things I achieve. We will see. But first we have tea. Everything goes better with a cup of tea!