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. 

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

 

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 only positive thing for spoonies

I was talking to my daughter this morning. She also has fibromyalgia. She asked me what plans I had for today and I told her I was planning to take a shower.

We laughed at how ridiculous that sounded and then we realised that once again, it's all about spoons and being organised.

Given the nature of fibromyalgia, one can never plan anything until we wake up each day, and then it is entirely dependent on pain and energy issues. 

We can never be spontaneous, but have to weigh up the need or desire to do something against the reality- having enough spoons to see us through the day.

If one thinks there just may be enough spoons to go somewhere or do something, we then go in to planning mode. We may cook dinner in the slow cooker instead of preparing something at the end of the day.

Perhaps we will go to a doctors' appointment and must organise our day with the idea that dinner is taken care of via the slow cooker and the bed will be inviting and will be calling us as soon as we get home.

We become experts at planning our lives as we go, and despite fibro brain fog, we usually can think on our feet as to what would be possible on any given day. Today I am making a slow cooker stew for dinner and saving my spoons for that shower. 

I really hate being ill, and I can't think of any positives about fibromyalgia and other trials we spoonie friends have to endure. But the one (the only) thing I can think of for us is that chronic illness has made us masters of organisation and planning. 

Our home is so nurturing

Yesterday we went to the doctor who doubled Chris's fluid tablets as he has fluid in his lungs. He doubled one of my blood pressure tablets taking the total to 8 different types a day. 

I have fibro fog really bad and forgot to bring the repeat prescriptions we needed to get made up, so we came home and now have to go again today. 

On the bright side, we have been staying home most days and we both are feeling really content with the house we are renting. We both feel the LORD picked it just for us- it is perfect and nurtures us both. 

A lot of time is spent lying or sitting on the couch aka "the beach",  and the big window leading to the back garden is beautifully showing the birdlife. It is like a screen saver- it is never still and always changing with a bird or butterfly passing by. So exceptionally soothing for us both at this season of our life.

1. Today I must do a load of washing
2. Go to the chemist
3. Cook a stew for dinner tonight.

And my people shall dwell in a peaceable habitation, and in sure dwellings, and in quiet resting places; Isaiah 32:18

Is a little compassion too much to ask for?

 It is so difficult to adjust to a new normal after a diagnosis. After many years of wondering why I had all over pain and tiredness, I finally got a diagnosis of fibromyalgia.

I was relieved that I had a name to put to the painful syndrome that sucked the life out of me and added to my woes as a sufferer of angina, arthritis and back pain. And polymyalgia rheumatica thrown into the mix.

It made sense that with all these ailments, I would be finding it more difficult, or even impossible to do the chores that after a lifetime of being a wife and mother, were familiar and regular as the rising and setting of the sun.

With the newest diagnosis, came a depression because not only was I totally frustrated with having to constantly adjust to my new normal, but I was not afforded much compassion or understanding from others.

It was intimated, but not said, that I was lazy and using ill health as an excuse to be lazy. Nothing could be further from the truth. I was laid low emotionally as well as physically.

These days, it is rare to find someone who is compassionate for the chronically ill and/or aged. And it compounds the frustration and anger one can feel as one goes through the cycles of grief with a new diagnosis that limits one further.

I know a little understanding from others would go a long way to help me adjust and accept it every time I am faced with a new normal. 

Sadly, not only do most people now not want to listen about chronic illness, but they don't want to know. 

It's not a hard thing to commiserate with the trampled flower bowing under the weight of pain and illness and later, stigma. 

We don't necessarily ask for help from others, but is a little compassion too much to ask for? 

I am going to stay in bed.

 

Some days don't go well. Like today. 

My fibromyalgia was paining me badly and I was so tired that I could hardly breathe. But I really wanted to bake some no knead bread to accompany my pea and ham soup for dinner tonight.

I prepared the soup and decided to do it in the slow cooker. Knowing I had a flare and practically no spoons, I bought all pre diced onions and garlic and carrots and as far as the preparation went, it was not too taxing on me.

Covering the dough to proof, I made Chris and I a cup of tea and literally crashed into bed for a nana nap.

Coming out a bit later,  putting  the dough into the dutch oven, I bent down to get something out of my cupboard- my back seized on me and I couldn't rise back up. Leaning on the cupboard door, there was an almighty crack and the pine gave way and the door broke off from the hinges. I felt so upset.

I decided to check on the soup and to my horror, I saw that I had forgotten to turn the power on by the power plug. It was far too late to set it going for dinner time. 

Because I had no energy, I asked Chris to transport the crockpot of prepared soup to the fridge. I just didn't trust myself.

It's so true that the spirit is willing but the flesh is weak. No truer word ever for a fibromyalgia sufferer. 

I am hoping tomorrow will be better. If not, I am going to stay in bed.

Just when we came up for air!

 

So today I had just finished ordering my groceries online when I received the news that all of our home state, Victoria, is going into a five day lockdown starting tonight at midnight. It was a snap decision.

I have been preparing for this, so it didn't catch us unawares. Well, the timing caught us unaware, but the possibility that we could be forced to stay home again didn't.

Since the lifting of restrictions that saw us locked down for nine months, I have been gradually adding extra tinned foods, non perishables and drinks to our pantry. 

I have been gradually getting extra prescriptions and insulin injections made up in case of another snap decision by the Victorian government to enforce a lockdown. I am glad I did.

Although it is supposed to be for five days, with this virus mutating and so on, one never knows. It is  best to be prepared.

With no visitors allowed to our home and nowhere to go,  it will be easy to recover from my most recent fibromyalgia flare that has seen me unable to think clearly, let alone write a blog post. 

I won't be feeling guilty for going to bed during the day, but even so, I would prefer the freedom to come or go as I feel led. 

We Victorians are getting old hands at being cooped up at home and it can be depressing. Especially as we were just starting to relax and relish going for drives and visiting family. 

It was certainly a lovely time and we should have known it wouldn't last long. Typical of events with this horrid virus... it took us back to nine months lockdown just past and coming just when we came up for air!