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. 

Not falling off the vine

 

Since turning 70 last May, I have noticed a rapid decline in our health. Heart issues are worsening, pains are hurting, fibromyalgia is making spoons are scarce and my mood is darkening.

We both are enjoying the peace in our home that has been jealously guarded and nurtured. Quite simply, we cannot cope with other's dramas.So much so that we have become reclusive.

The days when we don't have to leave our home are cherished days. And even though we make a point to get dressed each morning, we are not adverse to having a couple of Pajama Days occasionally.

In short, we are wearing out. Physically, mentally and emotionally, we are spent. I can say that we aren't spiritually spent because we pray and worship a lot. It does help.

I have been posting a little spasmodically because of excessive fatigue, and I have decided that from tomorrow onward, I will post in a diary form recording bloods, blood pressure and so on. Plus anything else the LORD puts on my heart.

Today is Sunday and I have just done the least I can do to keep our home manageable. With the fatigue being bad and no spoons, I took a nana nap and it turned into a grandma nap. Three hours.

But I woke up and felt a bit better and managed to fold some clothes that had spent their new clean life in the laundry basket...

Anyway, I had a comforting thought which I will share: there's an old saying that the aged say... "I am so ripe that I am falling off the vine!" Not very comforting. 

But the next thought was comforting- physically, yes I am- but spiritually, not so. Instead I am grafted into the Vine- Jesus and He sustains me and gets me through this painful path called life...

So, with His help, I am definitely not falling off the vine! 

Hear me roar

So I have a bad habit of leaving my dishes until I feel like doing them. This is a big mistake because we all know that they multiply overnight and in the morning you cannot find the spoons to do them. So you don't.

Eventually you run out of dishes and knives and forks and of course, pots and pans. You work harder by having to scrub really dried on food. It's a drag.

So the other day I woke up and decided that this would be the day I washed all those dishes and cleaned my kitchen. With both my knees with meniscus tears, I doubted I would be able to accomplish this.

Anyway, in stints of about 15 minutes each, I managed to knock over the dishes and clean the kitchen. It was a novelty to see the benchtops clear of dishes and I pinched myself to make sure I was seeing the empty draining board and not imagining it.

Life has been tough lately with torn knees, sciatica and fibromyalgia flaring. I haven't been able to stand much and my muscle pain has been horrible. But I did it! 

To 'normals' reading this, you probably will be thinking it's no big deal- it's doing the dishes. But to me it's like climbing a mountain or going on a 30 mile hike. That's how my body reacts.

To my Sacrificial Home Keeping Sisters, you will be rejoicing with me because you know how even a seemingly small task can feel like a marathon.

It was a marathon and I won! you can't believe how extremely proud of myself I am feeling right now. And relieved. It's nice to prepare a meal in a well organised and clean kitchen. 

I am savouring the moment and don't care if you are laughing at me! I can do anything! 

I am woman-hear me roar! 

We need to share the load

Sometimes I feel guilty for letting off steam at times but I really believe I could have a bit more support than what I am getting. 

We sometimes have words during my fibromyalgia flares and when I have polymyalgia rheumatica at the same time, it can make me scream in desperation. I just want a hand. It helps me emotionally as well as physically and I feel nurtured.

I know my husband is unwell and he has my understanding and utmost sympathy. But sometimes, the pain gets so bad and I have so little spoons that I will yell at him to come and make his own cup of tea or whatever.

After words,  I often cry because I aren't usually like that.  Pain changes people.  Especially unrelenting pain. And unrestorative sleep. Especially that.

Yet, to those who don't know the desperation that pain drives you to, they would just think I was being unreasonable and using my fibro to elicit a response from Chris. 

It's not that at all. Our health issues mean that there are times when we have to help one another. And lately when Chris is not well, I find I am left to push myself beyond my own comfort level while he sleeps on the couch.

His pain is not at the same high level mine is. His health issues relate to other issues regarding heart problems. But his issues are difficult for him to bear. I know that. 

Chronic illness in both people in a marriage presents its own problems. Each one having pain that makes the eyeballs bulge, causes arguments of who's pain or condition is worse than the other's. A form of validation if you will.

But here's the scoop about chronic illness. It's not a contest. Just another thing about chronic illness that most don't understand. We need to share the load.

Ordinary is good!

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 couple of loads 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 an ordinary 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 day that's ordinary and good! 

When the spoons are gone forever

 

The Australian government allocates $53,000 pa in a care plan to try to keep aging people in  their own home if possible. It works out cheaper than putting them into a nursing home. I am so grateful to live here where there's help because aging is no fun!

A lot of oldies here have to sell their home to get into a nursing home and/or have their aged pensions garnished. Chris and I have absolutely no assets to garnish and the Aged Care Package here is means tested.  

We rely on the Aged pension and that is all we have... so we qualified. 

We have worked hard in our lifetime, managed our homes, worked outside the home, brought up our children and possibly, even grandchildren. Now we find either that our spouse has passed away or is also suffering the effects of old age and cannot help up either.

There's no shame in asking for help. Even Sacrificial Home Keepers eventually run out of spoons and they are gone forever.

I can't believe it!

 

The last five days have been a dream come true! I have been sleeping better and I have woken up with spoons!

I have been very careful to keep pacing myself as I don't want to get a rebound flare due to burnout. So far, so good!

It's been about 22 years since I have felt this well. I am very grateful for the respite from pain.

So unusual is this new found energy that sees me operating as a "normal" person, that it feels "abnormal"

But today, I will enjoy this new energy and thank God for it. If it wasn't me I would want to know my secret- no secret.. but in any case, I can't believe it! 

Spoons are a distant memory.

 

Lately I have had a flare of my fibro flare. It's resulted in the most epic fatigue that it seems just breathing is an effort.

It's actually been going on for months. I keep referring to it as a flare, but today I realised it's a flare that never gives up. It's eternal- with no discernable beginnning and no end in sight.

I can sleep for 12 hours and still have no energy. 

We eat good nutrional food. I cook everything from scratch, but the ennui and corporeal exhaustion still remain.

I often think if I just have this or another cup of that, it will help me regain some spoons, but unfortunately nothing seems to help. I never got my first wind, let alone catch my second! 

My doctor is going to run some tests especially focussing on my thyroid and iron levels. I personally don't think it's that. My iron levels have been consistently high and my thyroid level is normal and has responded to my Thyroxine which I take for hypothyroidism. But I will do the tests anyway.

No, I think fibromyalgia is the culprit for my physical exhaustion. It seems now to be a way of life. 

Spoons are a distant memory.

That to me is true love

 

So I have had such a flare up of my fibromyalgia that I went back to bed leaving a kitchen full of dirty dishes. Dishes that sat on my draining boards and in my sink.

I just needed to recoup some spoons and I was hoping to awake with at least enough to clean my kitchen.

You can imagine my joy and surprise when I woke up a few hours later to find that Chris had run the dishwasher and wiped down my kitchen benches! 

Now those of you who suffer from chronic illness, especially fibromyalgia know that we can become victims of the rollercoaster of emotions. Grateful tears ran down my cheeks and I rushed to Chris and hugged him tightly. 

He was surprised at my emotional response to his help, but it wasn't just a helping hand in home duties. It was a feeling of nurture and love. Especially when he is battling with severe health issues himself.

It was an act that solidified our union as a team, our home as important, and his wife as cherished. And this cherished wife was very aware and very encouraged. Why? you ask. 

Because I know exactly how many scarce spoons it took him to do this. And that to me, is true love.

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.

 

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. 

It starts with you

  

Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.

Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.

Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.

On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...

It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.

When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.

So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.

I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.