Setting things to rights

So today is Monday and unlike some people who hate Mondays, I quite like them. I see Monday as the first day of the week and it is a day to put things to rights.

Sundays are our sabbath and we only do those things that are truly necessary. After all, it's supposed to be a day of rest.

We chill out and watch online services and listen to worship music and nap. But with Monday comes the need to plan to incorporate those tasks that went undone yesterday. 

I usually have washing to do and at least one load of clean clothes to fold. I try to get caught up with that plus any dishes that need washing get put into the dishwasher.

For me the tasks that take the most time and are frequent flyers are washing folding and dishes.

Provided I am not in a fibromyalgia flare and have enough spoons, (and this is always unknown and erratic), I will tackle these today.

As I said, I follow Sylvia's Lists and I will loosely follow this for Monday..  

There's always a feeling of satisfaction when/if I can do these tasks on Monday's... but still, come to think of it... I always feel happy any day when I am setting things to rights..

We rarely get any validation

 

Those of us who suffer from fibromyalgia often have little sympathy or even care from a lot of people.

Most people haven't even heard of it and most who even have, often believe it is not a serious syndrome to suffer from.

They don't realise that fibro is in fact all encompassing to the afflicted person and has the potential to dictate how we live.

Not only does fibromyalgia dictate our physical life, but our social, mental and even spiritual life. The person who states that it does not have a great impact on their life has not experienced a full blown fibromyalgia flare.

It is a sad syndrome as it has very few visible symptoms and people imply that we are faking it.

The only thing we fake is feeling better than what we do. We rarely get any validation.

Rome wasn't built in a day!

 

As you probably know, we have recently moved again. It is almost complete with just a few boxes to unpack.

We are so very tired and I have exacerbated fibromyalgia and angina pain.

We love this new house and is still quite large like the one we have just left. But honestly, I really hope we dont have to move again because I feel quite done in.

Most things now have found a new home, but as soon as I recover from the move, I will declutter and organise our things better.

So I am finding myself falling asleep at the computer or feeling really razzed, and I have had to have a nana nap during the day or I won't have enough spoons to cook dinner...

And speaking of dinner, I have been making use of my slow cooker to help me when I haven't got any spoons. It has helped take the pressure off me.

Lately having no spoons is my new normal so I have had to rest and pace myself. 

Something this move has taught me is to be patient. I have had to learn to wait until others are able to help me and my new mantra is "Rome wasn't built in a day!"

First we have coffee!

 

As you probably know, my twin sister is ill and has been living with us for the last five months.

She has now moved into her own new rented home and my son, her carer has moved in with her. She's in need of a carer.

Helping her has left both Chris and I spoonless and that condition is not going to improve any time soon. We have now found a new rented home two minutes away from them and the move is happening in a few weeks.

Although we feel the effort will be worth it, finding the spoons to move is a hit or miss thing. I must force myself to keep going.

I am suffering from an expected fibromyalgia flare, my knees are hurting and I cannot move my neck thanks to polymyalgia rheumatica. 

I am happy to be moving but not so good with the pain. But I pace myself taking frequent breaks and drinking endless cups of tea.

My kettle is constantly boiling for a cuppa and it is the first thing I do each day. I join millions of others in enjoying to lifting qualities of coffee or tea to start each day.

Like I read in a book, "First we have coffee!", it has proven to be true for me, only my lifting beverage is tea! 

It is what it is! indeed!

 

In my efforts to still be mistress of my home in spite of severe health issues, I have tried to pare down my necessary daily tasks.

I can forgo doing the washing for a day or two. I can not make my bed or do much cleaning. But every single day I find I must cook, which is a necessity that brings the second necessity of the day: doing the dishes.

Oh I have left them before during a fibromyalgia flare. But I have learned that they seem to multiply like rabbits- my kitchen sink and bench are testimony to this!

I have left the dishes until the morning or even until the evening, but the mess on the plates and cutlery makes the job not only labourious, but "yucky". So I have learned to keep abreast of them.

Now I know some people use paper plates to avoid doing the dishes, but I am old school. Besides, everything tastes better on a china plate or in a glass or cup. I detest polystyrene cups or picnic cups.

Occasionally during a bout of angina or fibromyalgia or even a day of back pain, I am happy to order take away meals... but it is such a nasty blow to the budget that this is rather rare.

So then I am now convinced that I must acquiesce to doing the dishes daily as we absolutely must eat- there's nothing else I can do about it except cook.

Finding two daily essential jobs wasn't easy because there are so many more things one could count as essential. 

More over, one thing chronic illness has taught me is that spoons dictate not only one's lifestyle but standards.

One can either accept less high standards or die trying to sustain them. And given the effort in just breathing and being some days, the standards become more achievable.

I have had to accept what the young ones say, "It is what it is!"  Indeed! It is! 

When you got no spoons everyone has to help!

So my respite from pain has come to a sorry end. I have been hit with the Mother of all Flares. Just breathing is too much effort and sleep is brief and light. The truck that hit me didn't even stop. 

I have been pacing myself majoring on keeping the dishes and the washing up to date. It hasn't been too difficult really as I have planned in advance for the inevitable fibromyalgia flare that comes after a respite.

Most people who don't suffer from fibromyalgia would call me a pessimist, but we Fibromites know how fickle our body is and how greedy it is for spoons. We never can have enough spoons to say we are energetic. Spoons are energy measures

It's enough to have enough spoons to take a shower some days, and we usually suffer after for it in spite of the pride in ourselves that we made the effort and did it..and the luxurious feeling that being dainty brings.

No, we are realists who accept that our bodies are treacherous. They lure us into a false sense of joy in a seeming abundance of spoons- well enough spoons to make us believe that we can change the sheets, bake a cake, vacuum the lounge room or go shopping. In real life shopping, not just on the computer.

Knowing better really, but delirious in the freedom that a few spoons brings, our joy knows no bounds and we actually dare to live like we did before Fibro claimed our lives, bodies and joy. And we keep living in the moment full of joie de vie until the joy and spoons are gone.  

No, I knew from 20 years experience that my respite from pain would be short-lived and it was.  But because of planning for it, it hasn't seen me in a total mess, overwhelmed with meals and mess.

I had my dishwasher and I kept up with the dishes. I did a load of washing a day and I dried it in the dryer. But my greatest life saver was my frozen dinners I have in the freezer. They saved the day.

In all honesty, though I haven't kept the house running smoothly all by myself. I have had to enlist Chris to help me with stacking and unstacking the dishwasher and I asked him to put his own clean clothes away as soon as they came out of the dryer.

He has been really good actually- a blessing really. He also encourages me to take a nana nap, and feeling so fatigued and sore, I am so glad. We all need a hand when we are feeling so wretched and when you got no spoons everyone has to help! 

We walk that path together.

 

It's a sad fact that lately Chris and I wake up each morning feeling exhausted. We can sleep for 8 hours or sometimes 9 and still feel tired.

We ache all over and carry the "just woken up" brain fog all day. Our morning routine consists of bloods to check the blood sugar levels and then an insulin injection for Chris followed by a hearty breakfast of pills swallowed down with a nice cup of tea.

Our love language is spoons and our song of lamentation is that we don't have any or that it won't be sufficient for the day's activities. We live just to take another nana or grandpa nap.

Of course I have a double whammy of woes, with my diabetes and fibromyalgia. The pain never departs except for the brief few minutes Chris rubs my feet. I have the combined effects of peripheral neuropathy, in my toes especially and the foot pain that comes with fibro.

With ongoing chronic fatigue, I am certain to fall sleep just 5 minutes into my foot rub. I joke and tell Chris that these days it's better than sex!... only between us- I think it's true! I mean when everything hurts and it's hard to breathe with angina and pulmonary hypertension, foot rubs now are the only pleasure in life that steadies my breathing and still relaxes me..

And talking of breathing, that RSV flu type virus is still hanging around. Not as bad, but bad enough to have me keep my asthma puffers strategically placed at my dining table, computer desk and bedside. It too drains my energy and adds to the joy of a fibromyalgia flare.

Statistics show that more women have fibromyalgia than men, but I often wonder if Chris' chronic fatigue and constant body pains are indeed fibro... there's no particular test to find out, but it wouldn't surprise me at all...

Meanwhile, he lives the horrible life of a fibromite, but at least he doesn't have to validate himself with me. We walk that path together...

I. have. never. felt. so. weary!

This last week has been very taxing. We have had to help my sick sister close down her rented home and move in with us until she finds another rental home.

We have been so stressed due to the increased pain and my fibromyalgia flare is off the charts!

There's times in life that you have no choice but to pitch in and this has been one such time.

Because of the stress we have come down with a chest cold which is the pits at the best of times!

All I can manage today is to make some  Jewish Penicillin. I am planning to have a nana nap soon.

Each morning I wake up unrested and have no spoons to speak of, yet I still manage to help in the packing and keep up with washing and dishes.

My grandson and son are moving the heavier stuff today so I am flaked out in my armchair.

I. have. never. felt. so. weary! 

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! 

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.

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.

 

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! 

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...

It's gonna be a PJ's day.

 

The rain is pouring down but it's not cold just pleasantly warm after the last few days of summer heat. Xena is still asleep on my bed.

Chris is watching TV and I have got the breakfast dishes soaking in hot soapy water. The house is tidy and cosy. Life is good.

I woke up early and left Chris to sleep. I heard the birds calling each other and watched as my beloved magpies came down searching for some left over sausage among the rice dish I put out for them last night.

Carefully opening the sliding door that opens to the garden where they congregate waiting for me to feed them, they sat only inches away from me. Gradually they are coming closer to feeding from my hand. 

The washing machine is churning away at the load of clothes I am washing. I try to do a load a day so as not to use up all my spoons in one hit, folding them and putting them away. 

People with fibromyalgia would understand the need to pace oneself in order to achieve some completion of household tasks. There's so much job satisfaction in even doing one load of washing and putting it away. 

I have some steak thawing for dinner tonight. I am planning on cooking a vegetable intensive beef stew.

With the cooler weather and rain, the menu begs for a stew...

I still haven't changed out of my pajamas and it's 1pm but I don't really care. We aren't going anywhere and I am feeling pretty laid back and a tad achy. It's the change in weather.

It was a pretty slow but pleasant morning with Chris making me some breakfast and a cup of tea. The panadol is kicking in helping me with the aches and pains of fibromyalgia that's reacting to the weather change, but I am glad to report that it's not a fibro flare per se.

So in spite of aches and pains, I am feeling pretty good today, but even so, it's gonna be a PJ's day. 

Sitting down brings no comfort

 

Over the years of chronic illness, I have noticed that what used to be a reward for spending spoons and being proactive was in having a comfortable place to sit.

Gradually the places that once gave me a comfortable sitting have become objects of pain. My armchair, couch or sofa, typist chair, dining chair and car seats have all become places of torture and there's no reward or rest found in them.

Like wise, my bed also yields no comfort to my fibro effected muscles or my spinal pain.. it can't be the furniture's fault.

I think the fault lies in my allodynia which is pain on the lightest of touch. It is often a part of fibromyalgia and/or diabetes neuropathy. There is no cure.

I cannot take many tablets that are commonly prescribed for fibromyalgia, such as Lyrica so I have had to find something that helps with the pain. 

With both peripheral neuropathy from diabetes and fibromyalgia, and with constant knee pain, I find the only time I can completely relax is when I am lying on my couch and Chris is rubbing my swollen feet. The swelling is from heart failure.

The massage seems to distract the nerve path that interprets pain and replaces it with a pleasurable sensation, allowing me to often drift off to sleep.

I know it's sad that a foot rub is the only help for me at this stage of my life, but it is what it is. And it is good for me as sitting down brings no comfort. 

It was good while it lasted!

So yesterday I woke up without the usual muscle pain and fatigue that characterises fibromyalgia.

I sensed that I had some spoons in abundance and I was in a quandary as to how I could best utilise them without giving myself a flare the next day.

I decided it would be sensible to pace myself which is what I did at first... I say at first because like all good intentions, they can fall by the wayside. And they did.

There was so much I had put on the back burner and left undone. But then it was a long time since I had any energy and to be honest, I was so used to living with chronic illness and fatigue that feeling energised seemed "abnormal"

So I started a load of washing and cleaned out Xena our cat's litter tray. Then I hung out the finished  load of whites... also something I have had to forgo due to no spoons and pain.

I rummaged through the fridge and cleaned out the out of date food. Then, remembering to pace myself, I made a cup of tea for us both and decided we needed some cookies to have for afternoon tea.

After I made a batch of cookies for the afternoon, I brought in my washing. It dried quickly because the weather has been rather warm.  Too warm in fact.

By the time I came back inside, I was wilting. My spoons were dissipating! Quickly! 

My muscles and back started paining me and it hurt to turn my neck thanks to polymyalgia rheumatica.

I left the clothes in the laundry trolley and kissed thoughts of ironing my pillow cases goodbye. I had so wanted to do that too... just one of the jobs that I had to put on the back burner, put back again..

Chris made me a cup of tea and I took some Tramadol. I only use them for top of the range fibro flares and knee pain.

As I sat sipping my tea and waiting for the Tramadol to work, I realised that I hadn't got much done in spite of some spoons. 

Xena had a clean litter tray. We had some cookies to wash the tablets down. The fridge had no science experiments but didn't get a thorough clean. And I hurt so badly for so little! 

If I ever get another day with some spoons, I will not bother to hang the washing out... I nearly always use the dryer since fibromyalgia found me. And I know my poor old broken knees will thank me for not walking so far up the back garden to the line.

I guess I can sleep on unironed pillowcases.. it has been known  to happen! And as the pain relief finally kicked in, I decided that you can't really win with spoons. They are devious little dictators!

Chronic illness is not for wimps and I refuse to give in to depression. I think all things considered, I do a reasonable job of keeping our home nice. 

Still it was great to wake feeling refreshed and alive! It was good while it lasted! 

I am not lazy!

 

So I am often low on spoons and it necessitates a hands on approach. I must pace myself and rest up in the hope that I can find some spoons from somewhere in order to do the needful.

Usually by the end of the day, you will find me resting in my recliner rocker or in bed. Especially when I have a fibromyalgia flare or a bad day with breathing difficulties.

Apart from the usual taunts such as "but you don't look sick" and the need to validate my need for rest, I find that the latest taunt is "you are so lazy!"

But appearances can be deceiving. If I were truly lazy I wouldn't even be resting or pacing myself in order to do a household task or cook a meal. I wouldn't even be entertaining the thought of cleaning or cooking.

People presuming to know my situation are often getting it all wrong.  And it used to hurt. But these days, I have decided to let it run off my back like water off a duck. 

I no longer let those unkind remarks get to me... Chris and I know the truth and that's all that matters.

Like looking well when I feel like death warmed over, resting to enable a task to be done does not mean I am indolent or don't care about my husband or my home.

Taking care of myself in order to take care of others may appear selfish. But nothing can be further from the truth: I am not lazy! 

The power of a nana nap

 

So over my last 25 years of chronic illness my level of energy is often very low. Heart failure, pulmonary hyertension and particularly fibromyalgia rob me of my spoons and dictate the need to sleep.

I have found that it is best value for me to take a short nap- a nana nap of no more than 40 minutes. If I sleep for longer than that, I find I can't sleep soundly at night.

First clue for a night of non restorative sleep for me is the inability to go to bed at a reasonable hour- for me it is 11pm. I simply feel too stimulated to relax and go to bed. 

Being a night owl for me means pain tomorrow. I simply can't function properly if I have gone to bed late, even if I stay in bed till later.

Apparently this has something to do with our circadian rhythm and my rheumatologist told me that every hour we sleep before midnight equates to two more than after midnight...

I have been purposely taking a break in a short nana nap for a few weeks now and I find I am waking up feeling strong enough to do some chore or another that I haven't been able to get to...

If I go to bed and sleep for a few hours, which is easy to do when one is chronically fatigued, I often find I wake up feeling disoriented, giddy and generally out of sorts.

If I sleep a lot during the day, I obviously can't sleep properly during the night. So by having a planned nana nap as opposed to a long sleep, I find better value and easier deeper sleep at night.

In order to influence my body into having a nap as opposed to a full long sleep in the day, I now lay on the couch. Chris rubs my swollen feet and very soon I drift off to sleep. And for some reason, my body only sleeps for about 40 minutes. If I actually go to bed, I will sleep up to 3 hours...

By planned sleep routines, I can release more of the power of a nana nap.

It is what it is!

 

So it's Christmas Eve here in Australia. I am struck down with a vicious fibromyalgia flare. 

In recovery from going out for medical tests for both myself and my daughter, I am trying to find some spoons to take a shower before bed.

As I mentioned, Chris and I are cancelling Christmas this year. In light of how I am feeling, it is just as well.

Chris is recovering from a fall last week and is not feeling the ho ho ho either.

Apart from a traditional Christmas lunch courtesy of Lite N Easy, we will be taking it easy tomorrow.

We are going to take Holy Communion online with my sister and son at lunchtime and that will be the extent of our celebrations.

As I said in the last post, it is not an ideal Christmas, but it is what it is.... fibromyalgia wins again! 

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.