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...

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. 

Welcome! Come in and lie down!

                                                    

So yesterday we  had plans to visit my son and my twin sister who share a house together..I had been looking forward to it for a while.

When it was time to rise, I didn't feel well enough to go and it was only because I had to deliver some medications that I made the effort to leave the house. My fibromyalgia and polymyalgia were both flaring and my body was missing the Prednisolone...

On our way there, I kept falling asleep, only waking up when the seatbelt garrotted me... I felt weak and disoriented.

By the time we arrived after a 40 minute drive, I couldn't focus and after ordering McDonalds online for lunch, I fell asleep at my sister's computer.

We ate lunch and I still felt like my head was full of cotton wool and my muscles especially in the neck and shoulders were so sore I nearly cried.

My twin and son who has chronic pain issues from a work injury and fibromyalgia, told me to go and lie down in her bed. My sister joined me and my son went to his room, leaving Chris to watch TV and/or sleep.

I don't know how long I was asleep, but Chris came in and asked to go as he was feeling unwell with his high sugars and wanted to go while it was still daylight.

We quietly let ourselves out and took the scenic easy route home...and I slept on and off throughout the journey...

Next week my twin and I will be 70 and they are planning to come to our place. Although I am looking forward to seeing them, I know it will be a shortlived visit.  

Chronic illness in the form of fibromyalgia, polymyalgia and lupus for her, dictate our lives somewhat... in spite of the best intentions, spoons dictate rigidly and always win.

We will eat, they will leave to go home to sleep. It looks very like I will be saying, "Welcome! Come in and lie down!" 

    

             

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!

Failing fast

You may have noticed I haven't been posting much lately. Fibromyalgia, heart disease, high blood pressure and now boils have taken over my body all at once.

My body is failing me and the fatigue is not only sapping my strength but my mental faculties. It is hard to formulate a sentence these days.

I have been to the doctor. My blood pressure meds have been increased (200/86) and that in itself makes me tired.

These days it takes me all my time to look after Chris and my home. Forget socialising.

I am on the strongest oral antibiotics, taking 9 a day. They have brought the boil on my spine to a head. I am waiting for it to pop itself, rather than try to squeeze it. Though I think I would die from the pain if we tried to do that. The boil is quite large.

I pace myself to try to eke out my meagre spoons but I find I just have to have a nana nap in the day to have enough spoons to cook dinner.

I am praying that I feel better for Christmas as we are having family here for lunch Christmas Day. Most certainly I will have to be stronger than what I am now. My body is failing fast.

It gets very tiresome!

Over the last few days, I have had a cancer scare with someone dear to me, and my fibromyalgia has flared and with the pain comes that most embarrassing symptom of all: fibro fog.

I was talking on the phone to my sister, and was telling her something that had happened, but I never got to finish what I was saying. I got distracted mid-sentence and never finished the tale.

Unsure of her knowing of whom I was speaking, I digressed in a discussion on who he was, and when I tried to remember the point of discussion- I simply forgot.

Being that my sister also suffers from fibromyalgia, she understood-otherwise it would have been totally embarrassing. But there have been times in the past when I simply can't think of a word and flounder.

Like the time I was at the doctor's and was telling him something important. I simply forgot a word and there was a pregnant pause as I floundered to find it- embarrassment made it more difficult to find. He just looked over his glasses at me until I ventured to say that my fibro was flaring and this isn't usual for me. I am usually verbose.

Many times during a fibro flare, I can be reading something and it just doesn't sink in. I reread it and reread it before it is clear what I have just read. Or I can be paying the bills and have to check upteen times before I pay it to make sure I have the correct amount and I must check again to whom I am paying said correct amount. 

This coupled with the physical pain and fatigue make for a very challenging life during a fibro flare. It has the propensity to sap you of your self confidence. It can make you doubt your sanity. It can scare you to death as you worry about your competence to even run your own life at times.

I would not wish this on anyone: the pain. the fatigue. the confusion. the sapping of confidence. the insomnia. the judgments.

Many times I cannot attend church or read my Bible and I sense that there are some who think I am backsliding. Far from it. I am simply too exhausted.

All these things are a Fibromite's lot and no one seems to understand if we give in to a rare moment of snappiness or pique. It's just that the whole fibro thing with pain 24/7 gets one over it very quicky and it gets very tiresome! 

Today's to do list:

• Washing
• Clean my kitchen
• Cook chicken risotto for dinner

 

Oh no, no ho ho!

So we had our little granddaughter Taylah for a few days, and picked her up Friday, but it didn't go to plan. After a full day, in spite of me making an effort to play with her and give her my full attention, she decided she wanted to go home. 

She said she missed her mother, and so we made the 2 hour trip each way to drop her off again. Even though I didn't drive, I was exhausted. Even being a passenger is gruelling when you have a fibromyalgia flare, angina, sore back and broken knees that throb with every heart beat.

I had bought a rolling pin with the nativity on it and planned to make Christmas cookies as gifts. Well, I did make cookies as promised with Taylah helping me, but not the ones I planned to give away. They were plain cookies. 

When I told her we had to refrigerate the dough for a couple of hours, she said she didn't want to have to wait. So the Christmas cookies didn't come to pass. 

The Mother of all Flares has come to pay me yet another visit- or maybe I just haven't recovered from the last one. I am feeling so exhausted I could collapse. So yesterday I had a nana nap and went to bed earlier than normal.

I was hoping that would do the trick and give me some wind under my sails, but in truth I awoke with no spoons. No spoons on Christmas Eve is a disaster!

We were supposed to leave our home around 11am today and visit my children and grandchildren but I felt unsteady on my feet, due to wonky knees, foggy in head due to fibro and hurting so badly with my spinal stenosis that I had to cancel.

Tomorrow we are supposed to see Taylah open her presents, visit my sister and son for lunch and go to my step-daughter's for afternoon tea before driving the two hours home before dark.

Truthfully, unless I have a miracle, we won't be going. After I finish chatting to you, I will be letting the Tramadol work by going to bed to rest. I really want to feel better.

As much as I love my family and Christmas, it would seem that it is going to have to be cancelled. It's a pity but it is what it is! Besides, nobody wants a spaced out whiny woman around them on Christmas Day. And I don't want to her, but unfortunately it's hard with illness to have any ho ho ho. 

Life is good in spite of setbacks

I am trying to keep up with my home making duties. I have to do some dishes and clean my kitchen.. My knees are paining me so much today, that I won't be able to do much more. 

Fibromyalgia is back again and spoons are scarce. I am also psyching myself up to take a shower. Lucky we have a shower chair now. Funny how you don't think twice about it until chronic illness comes a'callin! 

With the brain fog, I get side tracked often too. Now I ask Siri to remind me to change the loads of washing over from washer to dryer. I need to find an app to tell me I have left stuff out that should go in the fridge or that I have nuked a night time snack and find it in the microwave in the morning hahaha

I am planning  on using  my slow cookers  a lot today.  I will be slow cooking the pork chops in a sweet curry sauce with  the rice.  I will be making some Jewish Penicillin in another slow cooker  and I will make  a chow mein in the other slow cooker for tomorrow.

After that, I plan to feed the birds and watch them eat...  sitting out on the porch under the apple blossoms on the neighbour's tree... it's the first day of Spring here in  Australia. Life is good in spite of setbacks..

I haven't bothered to do it.

 

These last few days since my last post have been difficult to say the least. With Spring here in Australia, the weather has been at its' most changeable. 

In Melbourne where we live, it is possible to experience all seasons in one day and the joke of the day is to wear a bikini under your raincoat. It plays havoc with Fibromites.

We Fibromites know that inclement or changing weather patterns causes a fibromyalgia flare and for me it has run true to form.

I have been unable to think clearly let alone blog, and the depression that has enveloped me in its' dreariness has made it impossible to rise above the constant background of muscle pain.

By the time I have made our bed and tidied our home in preparation for the nurse from Hospital in the Home to come to change Chris's post op dressing, I am in so much pain that I just want to crawl back into that newly made bed. Sometimes I do.

Still on lockdown with Covid 19, we only go to the chemist or face to face doctors appointments when a phone consultation isn't suitable. And the way I have been feeling, it is more than enough.

It is not uncommon for us to prepare ourselves for a few hours out of the home as if we were planning a vacation. When I say "prepare ourselves" I mean emotionally.

We have to give ourselves a pep talk and conjure up motivation and spoons to leave home. Physically, there's not much to do.

We may or may not shower, depending on how recently we have had one. We get dressed and we rest. Avid clock watchers, we usually leave our departure until the absolute last minute, so loathe are we to venture outside these days. By the time we are no longer in lockdown, I think I will be preferring to stay home.

Close to the hour to depart, I will usually check my hair has been combed and on a really, really good day, I will pull all stops out and put on some lipstick. With mandatory masks, no one is even going to see that these days, so lately I haven't bothered to do it.

It's enough to drive me to drink!

So Friday I was talking to my new doctor about my back problems and asthma problems, my blood results and consequent treatment. My cholesterol and sugars were good as was my thyroid thanks to Thyroxin tablets. 

My uric acid levels were good, which they should be with me on medications to stop making kidney stones. And the conversation went like this: "Your uric acid level- have you always had high uric acid in your blood? No? well it probably is due to alcohol intake!" "Excuse me? I don't drink alcohol at all!" "Oh really? well- good: good! So it's just in your blood... OK!"

He was running through the blood tests which showed my liver GGT was unusually high. "Why do you think that is, Doctor?" I asked. "Probably too much fat or excessive alcohol intake!" "Ahem- I don't drink alcohol at all!" "Oh, yes. Of course!" 

I do not drink alcohol, but his reaction to my liver problem and high uric acid level annoyed me somewhat. I mean, if it was a problem, I would tell him so instead of worrying myself as to what it is caused by.

My blood pressure was slightly up which isn't surprising when I am meeting a new doctor. Especially one who suspects that his new patient is a drinker of the new wine! or casks thereof! 

So next we had a discussion on which diet program to follow as the fat lady with the drinker's pot belly needs to lose weight.

And right in the middle of a discussion of Keto and diabetes, I stopped mid sentence and lost my train of thought. Embarrassed beyond belief, I told him I was having a bad fibromyalgia day and it was just brain fog!

He just looked at me over his glasses and I could tell what he was thinking... it's too much imbibing of alcohol that does that!... 

Leaving the clinic with a handful of diet pamphlets and scripts, I asked Chris to drive me straight home. 

I headed for the kettle to make myself my favourite beverage- tea. But I swear I was so upset by the insinuations that I cried out to Chris's surprise, "It's enough to drive me to drink!" and it almost is! 

Nothing like a nana nap!

                                                     Nana nap

One who is not a grandparent but is prone to taking naps during the afternoon for 1-2 hours.  Urban dictionary...

"I had a nana nap this afternoon and now I am ready to party again!!"

I know I am not alone when I say there's nothing like a nana nap to help one get through a day of pain or trouble. 

There are some days when I cannot function without a nana nap, and then there are the rarer days when I don't need one. But for me with a fibromyalgia flare, a nana nap is not a luxury, it is a necessity.

A nap in the middle of the day has been proven to make one more productive, and in some countries such as Spain they close the shops and businesses in the middle of the day and have what is called a siesta. The Spanish equivalent of a nana nap.

I do find when having a nana nap, that if I oversleep I can wake up feeling sore all over and brain fogged, so I try to limit it to no more than an hour. More than that and I feel like I am starting the whole morning stiffness and pain cycle all over again.

I used to take a nana nap during my lunch break when I was working in an office. I just went to my car and laid down in the back seat for a while. Siri would wake me on my phone in time to collect my thoughts and freshen up before going back to work. If it was too hot, I tried to nap in the ladies room where they had armchairs and couches.

It isn't necessary to actually go to bed to take a nana nap; I find my couch aka "the Beach" works for me, or any comfy chair will do. Provided that I don't oversleep, a nana nap often kicks me on to cook tea these days.

Today I have just made our bed and cooked dinner. Chris and I just got ourselves something quick to eat for lunch. I just took advantage of our beautiful view from the couch and watched the clouds and the birds. I dozed a bit and felt well enough to cook tonight and to actually wash the evening dishes.

Often I run out of spoons for cleaning my kitchen, but my dozing paid off and so I reiterate that there truly is nothing like a nana nap!

Not lazy: smart

Anyone with chronic illness that makes you fatigued like fibromyalgia, will know that part of accepting the new normal is planning to do the most you can with the least amount of spoons. That applies to all housework chores and social activities. 

Lately, Chris and I have been ordering our groceries online. This has so many benefits and is worth the $15 delivery fee. It makes ordering the shopping easier by having a list of previous shops to copy from. Wonderful when concentrating is hard when one has brain fog from fibro or medications...

The delivery guy will even bring it into the kitchen and place it on the kitchen bench. It is then just a matter of putting it all away. So much better than handling it at the checkout, loading it into the boot of the car, bringing it all in.

As a Sacrificial Home Keeper, I have streamlined the inside activities, and now I have streamlined the outside activities. 

With paying for delivery, some may say shopping online for groceries is lazy: I say no: it's actually very smart. Designed with the Sacrificial Home Keeper in mind. I am very grateful for it.

Today's list is simple as I am still under the weather:

1. Do dishes
2. Fold clothes in dryer
3. Make our bed
4. Cook lamb stew in slow cooker for dinner

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!