But then again, maybe not!

 

With the start of our summer tomorrow, we have been having some very lovely days this last week and today. I have enjoyed the respite from constant rain and so has my body.

Fibromyalgia has taken a back seat and I am enjoying having some spoons. It's been so long that it is a surreal feeling. 

I have been washing our bedding after the winter months and will be packing away our doonas. We both don't sleep very well and so we prefer minkie blankets. They are light and easy to throw off if we get too warm, yet warm enough to preclude the need for the heavier doonas for a drop in temperature.

It's such a joy to open the windows throughout the house too. We are fresh air freaks. There's nothing like the smell of the early morning. 

I am going to make up my favourite cookie recipe today. And I think I will bake some sultana muffins for Chris. He loves them. 

In stark contrast to flare days, I have already had my shower and gotten dressed. I need to take our bloods and give Chris his insulin injection. I think I will serve him some soldiers for breakfast this morning.

I have pork chops thawing for dinner tonight. I may do an egg salad to go with them. It's salad weather here at the moment.

As I must pace myself so as not to bring on another flare, I think in between tasks I will go out in the back garden and sit on the garden swing. My friends the birds are so tame that they actually come down to eat almost from my hand. It's so relaxing!

I have a lot of things I want to do today, but nothing compares to sitting in the swing in the sun watching the birds. So maybe I will get all those things done, but then again, maybe not! 

My four tasks of homemaking

With severe Fibromyalgia and fibro fog, I find making lists helps me focus on what needs to be done each day in my home. I love following Legacy of Home blog by Mrs Sharon White and I have adapted her daily lists to my needs. On bad days I follow Sylvia's Lists. Here is my list. I hope it helps you too. 

WAKE UP: BLOODS, JAB AND MEDS FEED XENA

1.  There is the breakfast hour, which includes tea-time. First we prepare the meal and set a table.  I often set up a tray- table and sit in the parlour before anyone else is awake.  I am an early riser so I have my tea while the sun is just beginning to rise.  I enjoy this quiet time of resting from the brief bit of morning work.

Later, when the family has their eggs and toast, or fresh baked muffins with fruit, it is time to do the dishes.   We wash the table and the counters and do the sweeping.   All the work of tidying and making things neat are part of the breakfast duties.

2.  Often, during the morning hours, we do the laundry or the dusting and vacuuming. Each day has its special work. It may be Wednesday is for washing floors. Perhaps Thursday is for cleaning the bathroom.  The mid-morning hours are a good time for many of us to do these special duties of making a home look pretty. LIST WORK FOR THE DAY

3.  The Lunch hour is such a wonderful time to stop and rest.  We put out a fresh, clean tablecloth.  I love my white-and-teal checkered cloth.  It looks so homey and old fashioned.  We can set up our plates and napkins. We can do this even if we are just serving grilled cheese sandwiches, pickles, and chips!  It makes the lunch - work like a reward when we sit at that pretty table and rest and eat while we enjoy the family.  Next we do the sweeping and the dishes, much like we did in the morning.

4.  The dinner hour is such a precious time in the day.  I often start working on the evening meal at 3 in the afternoon. I work slowly and take lots of breaks. Sometimes I peel potatoes and start getting a little casserole ready to bake.  Other times I might do much of the work for a pan of lasagna. I like to put these pans of prepared food in the refrigerator and then just take them out to bake when it is just about dinner time.  That way I get a great deal of rest between all the work. CLOSE BLINDS LIGHT LAMPS  BLOODS AND JAB. MEDS AND MILK

Sitting with the family and hearing the blessing (or the prayer before the meal) is such a peaceful experience.  It is lovely to just sit and enjoy dinner at the end of a long day.  Then the work of tidying, doing the dishes, and sweeping the floor happens.  We make everything look neat and pretty. But I do not like to rush.  I do not want to just "get the work over-with." I take my time and go at a steady pace.  The work of cleaning and accomplishing the beautiful work of making a neat home makes me happy.  It also brings peace. .  Bathe or shower

These four tasks of homemaking do not take a great deal of effort.  They may seem simple and ordinary.  They may seem mundane.  But if we dress up in something pretty, wearing an apron, and keeping our hair up in a pretty style, we may find ourselves enjoying the work.  I have an old blue-and-white gingham apron that I love to wear. It is getting old and ragged. I will have to make a new one this coming fall.  I need a fresh supply of lovely aprons to wear as I do the housekeeping.

When we look extra nice as we do our work, we can find joy in the labor.  Doing the little tasks of keeping house, each day, with a feeling of contentment, will bring a true feeling of comfort and happiness to the family.  It will help them feel welcome and loved in a happy and simple home. adapted from Mrs Sharon White of the Legacy of Home

So glad I made that phone call

  

So last night I slept soundly. I had good news that alleviated a few of my worries.

After a couple of months of  my antidepressant being unavailable, I decided to do some investigations of my own.

Firstly, I did a Google search on shortages of Dothep 25mg and was lead to the website of AlphaPharm, the company that make and distribute the pills. There was a number to Customer Service so I rang it and the consultant told me that they would be in Australia and at Chemists by 15th December this year.

Naturally I was overjoyed as I had been thinking that I would have to start weaning myself off them or go on another tablet. I didn't want to do that because it was hard finding one that worked and it has worked well for the last 30 years.

Anyone who suffers from depression will know that once you tinker around with your meds, it can come crashing down very fast and the climb back up is very very long. And unpleasant. I didn't want to go there.

Of course it would have been worse for me because of the constant flares of fibromyalgia. It's difficult enough to cope with them when I am on my tablets. I didn't want to find out how bad it would be without them.

Happily, I won't have to now. I rang our chemist with the good news and he and I are so glad I made that phone call. 

Fibromyalgia is a wicked ruler.

So yesterday we went to see our daughter after lockdowns were lifted. The weather was beautiful and we bought some fish and chips for lunch and we ate them in the car overlooking some water. It was lovely!

We haven't been out socially for about 4 months, and it was a real novelty to keep on driving with no restrictions. We had a lovely cup of tea with our daughter and caught up. 

Driving home, we took the long scenic route. It made us feel glad to be alive. Last night, I slept like a baby but unfortunately woke up in top of the range pain. It's going to rain.

Fibromyalgia is such a wicked ruler. It can come and bite you on the heel, just  after you've had a lovely and special time. Maybe it was sitting so long yesterday, maybe because of the changing weather. I don't know. All  I know is I have another fibro flare.

Sitting here typing and in pain, I have come to realise that in spite of knowing that fibromyalgia will rear its' ugly head the next day, it's important to keep living.

The only alternative for me is to stay home permanently and wrap myself in cotton wool but be miserable doing it. I don't want that to happen.

So I will put up with rebound flares after using all my spoons if it means that I have a life other than that of an invalid. I am more than that.  I want to have episodes of pleasure in my life no matter how brief.

I need to make memories and keep in contact with my family. I will overcome it, even if fibromyalgia is a wicked ruler.

Things on my to do list are just basics today. Dishes, cooking and resting.

Choppy waters ahead

Well our day is still in full swing. I have dishes to do and clean washing to fold up and put away. We went to the chemist and picked up prescriptions yesterday. Apparently there's a world wide shortage of one of my anti-depressants, Dothep 25 and I am on my last script. I have been waiting for 2 months for some.  The Dothep anti-depressants help me with my fibromyalgia pain. I hate to be without them.

The practice of keeping extra meds in case of emergency has paid off for me. But I will be out soon. That's a worry as the sea gets very choppy when I mess with my anti-depressants. I think they are in a container somewhere on their trip to Australia.. Apart from those few tasks, and cooking,  that will be all I can manage today. 

I am praying that I get those anti-depressants before I run out or there will be very choppy waters ahead.

Coming to terms with it

Fibromyalgia is flaring and my spoons are scarce today, so it's just basic home duties for me.  Dishes, washing and meals.

If I can get down the steps today, I want to sit in the garden swing. I need the fresh air and relaxation that watching the birds brings. They are getting quite cheeky and tame now. I only have to open the door and they converge on the back porch/decking chirping at me to get them something to eat. 

They stand there practically with their hands on their hips, feet tapping: why are we waiting? Quite funny. I know they case the house out- I see their shadows on the roof and carport. I will miss this place. Chris wants to move back into "civilisation" when we sell the fiver. With Covid, we haven't had any chance to get people here to see it. 

As with coming to terms with the knowledge that my fibromyalgia and other issues will not get better, so I am trying to come to terms with missing out on country life.

Searching for some spoons

                                          

So Chris wasn't feeling well, so we didn't get out yesterday. I ordered $30 worth of groceries through Woolworths online. We have to pick them up at 1pm. It's so handy to shop like that. After that I need to get some prescriptions made up and go to the Post Office.

I managed to do all those dishes yesterday, with just last night's pots and pans to wash today. Tonight I will shower. If I do it this morning, I will run out of spoons and won't make it for the errands later.

It's hard searching for spoons and finding none, knowing that you have to do certain errands like shopping and getting medicines. And the tricky thing is when you find some, they disappear before you can put them to good use, and you find you need to take a nana nap just to accomplish it.

I know with talking to other Fibromites that I am not alone, as having no spoons seems to be a typical symptom of fibromyalgia. So for the next few hours before I pick up the groceries, you know where I'll be: searching for some spoons.

Keeping my wheels turning!

 

Good morning. It's a new week! We have to go out today, just some grocery shopping and a trip to the post office. That will be before I tackle last night's dishes. 

I was so tired last night that I left them, hoping to wake up with some spoons (energy). That didn't happen so the grocery shop takes priority today. 

Some lamb chops are defrosting for dinner tonight. I will do mashed potato, vegetables and gravy with them. A sandwich will suffice for lunch. 

I use the frozen mashed potato, steam packs of vegetables and instant Gravox gravy. I am fortunate in that Chris loves meat of some sort with two veg and if one of them's mashed potato, he's a happy man.

Being able to go without peeling potatoes and shelling peas is a godsend for me. The arthritis in my hands, the torn knee caps and spinal problems make standing to cook to prepare a nightmare. I am too short to sit on a chair as I can't see over the benchtops properly. 

When in a fibromyalgia flare like today, it is just the icing on the cake. It literally tips me over. The pain is incredible and never lets up. I do have a high pain threshold but when the pain is 24/7, it wears you down.

I think I will make myself a cup of tea and take some painkillers. That's the only way I will be able to function today. They can join my other ten tablets taken this morning. I swear I rattle when I walk.  It is what it is!  But hey, whatever keep my wheels turning!

It changes you, man!

So I have been feeling a little on edge lately. My fibromyalgia flare has returned with a vengeance. I haven't been sleeping well.

With an ongoing feeling of malaise, body aches and a constant headache, I find I cannot abide much noise. The TV up too loud leaves me clenching my jaw. Even the constant click of my rusty torn kneecaps as I get up and walk somewhere drives me insane. 

I want to lock myself away in a silent world. Not forever, just for a while until the flare passes. If ever. You get to feel like this is how the rest of your life is going to be and it aint pretty.

For the moment, I am being selective about what I listen to... too many decibels are actually painful to me at this time of the Mother of all Flares. Likewise, too much light hurts my eyes and makes my headache worse. 

It's something you wouldn't expect to have happen unless you have fibromyalgia. Nausea, light, cold, heat, pressure on skin, itching all over, hives, dry eyes, crusty nose and dry lips all vie with the noise to  reach a climax of sensory overdrive that gets unbearable. 

So, the answer to the picture here is yes, I have and I would make that annoying toy take its' last squeak. It is something I can control. And goodness knows, there's not much a Fibromite can control these days of flares.

I will hunt and pursue the droning fridge, the dripping tap, the ticking clock, the loud TV and even the squeaking toy on days of Flaring. They will cease and desist. Even if I have to shoot them sky high. Because some days, squeaks and drips are intolerable. I hunt them to survive, and I feel ruthless, for it changes you, man! 

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.