Pain is a disability

Anyone who suffers from chronic pain knows that it precludes us from a lot of enjoyment of life. Pain makes the vicissitudes of life that much harder to bear. 

Everything is exaggerated both physically and mentally, and the only thing I can do is accept that this is not my usual self, for pain changes people.

Pain disables us in many ways. from physical activity. from family life. from sex. from sleep. from patience. from social life. from functioning normally. from life generally.

The effects of pain cause us to withdraw from people and become reclusive. It makes us feel isolated and unable to really feel understood or validated. We learn to be distrustful of others.

Because chronic pain, in my case fibromyalgia, causes us so much mental as well as physical angst, we decide to retreat to our home often preferring it even if we had enough spoons to leave.

Seeing as pain is such a disabling affliction, it makes no sense to me that we are often regarded by doctors with suspicion when we request heavy duty pain relief such as opiates.

Most of us cannot get enough medication to adequately help us with our pain. We often then succumb to depression and live as recluses  due to agoraphobia. 

We who suffer from chronic pain know that it is a disability. Invisible and destructive. We live in the knowledge that pain is disabling. 

We just wish doctors were as aware of the ongoing relentless disability called Pain.

It's a pain in the neck

 

Lately I have been trying to keep off the computer. I have had a horrid fibromyalgia flare and I suspect along with neck and shoulder pain, I have also got TMJ and polymyalgia rheumatica back as well.

We  recently sold our GMC Sierra ute and with no more vehicles needing a driveway to park on, we have turned our attention to finding another rented home. It has proven to be a nightmare.

There are not many affordable homes to rent and we find we are vying with up to 20 different people at a viewing, all hoping to get the same property. It is terribly stressful.

I think the stress has exacerbated my fibromyalgia. I have been clenching my jaw and this has seen my TMJ return. Without a blood test to check ESR creatines and so on, I can't say that my PMR has returned, but judging from the pain and inability to raise my arms, I would not be surprised.

I have done 5 loads of washing and dryed it in the dryer as it's too painful to hang it outside. I have run the dishwasher and been to the chemist to pick up my Januvia for my diabetes. Just that small bit of work has exhausted me. My spoons have left the building.

Lately I have been thinking it isn't worth moving, but the possums in the roof wake me up with their thumpings and scratchings and the cold weather has meant that central heating is calling my name and beckoning me to a newer more modern abode.

Just typing to you has stirred up all my sore muscles, and it's traveled down my arm. So I will be taking some paracetamol Osteo soon and maybe I'll be having a nana nap.

Fibromyalgia, PMR or plain arthritis makes for a bad day by any name. Whatever ails me, it boils down to the fact that today, it's a pain in the neck. 

 

And the icing on the cake is...

Friday we went to the chemist and were treated to a cup of tea behind the counter. In between customers, we chatted and caught up. 

We were amongst the first of their customers and we have gone solely to them and rejoiced with them as their business grew. 

We don't go out much, and he and his wife know this. They are lovely people and we will miss them if we find a new rental- so much so, that we have decided we will still go to them for our prescriptions. 

Thanking them for their hospitality, they asked us to call in every Friday for coffee. Well, it looks like Fridays will be script days!   

In saying that, it will depend on whether my fibromyalgia allows me to travel. There are days when I just want to stay home as my spoons are few. But  just knowing that whenever we do see them, we will be welcome and missed is precious.

It does get lonely sometimes here. It's nice to have friends. The icing on the cake is that they are Christians! 

We just have to embrace it

We have been looking for another house closer to family. We have applied for one yesterday and had a phone call from the real estate this morning which sounded positive. 

Our fiver got to South Australia to its new owner and they rang us to tell us how pleased they were with it. So that's good. 

We are taking our GMC Sierra to the mechanic for a good overhaul Monday and then we will decide what we will do with it. Over here they are seen as a luxury ute and we think a young buck would love it. That's what we are hoping. 

My twin and son and granddaughter continue to recover from Covid but are still very much under the weather with it. 

I am convinced that our prayers have helped keep my twin. She's so many serious health issues such as lupus and I was afraid for her. 

I have done a load of washing, cleaned my kitchen and am about to make some lunch.  I have a flare of fibromyalgia again and my spoons are nearly all gone.  I will be  taking a nana nap soon.

With an imminent move, I am not looking forward to the energy output, however I am looking forward to being nearer family.

I will miss the birds and our feral cat who is gradually becoming less timid as we feed him. We have named him Teddy Bear as his face is surrounded by bushy fur and he is gingery brown and looks like a teddy.

But I know in  life that one rarely gets everything one wants and so we have weighed up staying or moving. We have decided that we want to be closer to family, particularly our daughter who has had leukaemia.

With a bird bath/feeder and garden swing to take with us, we will continue to feed the birds as we watch from the swing in the garden.

It's true what they say: nothing is sure except death and taxes. Life is full of change. We just have to embrace it.

More than a cake

So yesterday was my 69th birthday. We went to my twin sisters & my sons house for lunch to celebrate.

I really appreciated my sons' effort at the surprise cake he made for us. He's never made a cake in his life. We sang Happy birthday but we all decided not to light 69 candles in case it set the smoke detectors off. He put a few on for traditions sake.

We bought some KFC and enjoyed the family feast barrell. We had just enough chicken to feed four adults and we found we wouldn't need to have a cooked dinner.

This worked out well as I was suffering with a fibromyalgia flare and in fact almost didn't make it to their place for lunch. You know how it is: you arrange something for the next day, and you don't have any spoons when you wake up.

But as Chris pointed out, he was driving and I didn't have to do anything except sit there. So I went.

The trip is one and a half hours each way and I was so tired on the way home that I fell asleep in the car, garotting myself on the seat belt.

So not having to cook when I got home was a blessing. We just had some fruit and a cup of tea. It was enough.

My son lives with my twin who is ill with lupus. He's her carer. He cooks plain meals but never has baked a cake before. So when he brought out his birthday cake, I was more than a little surprised: and the other surprise was that it tasted good as well!

As we blew out the candles, his face was glowing with pride and satisfaction. I saw more than cake yesterday: I saw love!

"It is what it is!"

A friend of mine posted this on her Face Book wall and it was so simple and doable that I wanted to share this with you.

My hands are deformed with arthritis and I have little strength in them. Opening these ring pull cans have always been a challenge to me. 

Those cans that need a can opener are  simply not purchased anymore. I cannot use one as the arthritis restricts movement.

My fibromyalgia is paining me today and I didn't sleep well last night, so I will be cleaning my kitchen and psyching myself up to take a shower. That and cooking meals is all I will be doing today.

Meals will be Jewish Penicillin in my slow cooker.

It's not much to show for the vast amount of spoons I will need today, but as the young ones always say, "It is what it is!"

He works in mysterious ways!

So last Thursday I ordered my online Easter grocery shop. The driver had just taken off after delivering our order and immediately on starting to put it away, I noticed a bag that I hadn't ordered.

In it were four packets of frozen Hoki fish fillets and 2 packets of sweet potato fries and 2 packets of sea salt and rosemary chips.

I quickly rang the supermarket online customer service. There was a wait of an hour to talk to a human, so I "talked" to the AI bot there called Olive.

Olive was of no use to me. She told me to keep the goods as it was the supermarket's fault and accept them with their compliments.

The bot also told me there were no deliveries the next day as it was Good Friday, so obviously there was no way to get the bag of frozen foods to the correct purchaser.

I felt quite sad for the lady as I imagine this was what she had planned to feed her family Good Friday. I had done all I could but I couldn't help but feel sorry for her. I had been in a similar situation last Christmas and it's not nice.

I hope the lady was able to rustle up something else for Good Friday. Seeing as I have the fish and chips here I plan to use them Wednesday when family come up for lunch.

With my fibromyalgia flaring and a recurrence of polymyalgia rheumatica, I don't want to be cooking as I am out of spoons and in pain.

During this particular time, we had no spare money for extras which included Easter eggs for the grandchildren. They get plenty of chocolate, so they won't go without, but it was a bit difficult to not be able to give them any this year.

That extra food will come in handy as I haven't done another weekly shop and can't until next week. I guess the LORD has provided for our needs and for that I am grateful. He does work in mysterious ways sometimes! 

 

A helpful guide

As reported on the news, there will  be food shortages in the future, so I have been building my pantry and freezer up.

I am not living in fear, but rather I am trying to emulate that wise woman in Proverbs 31. She was not afraid of winter because she was prepared. I want to be prepared too.

As you probably know, I have been cooking extra meals and doing a cookup on days I have some spoons. It's been working marvellously well for me. Especially for those days when my fibromyalgia is flaring. I simply grab and defrost a couple of meals and dinner is done.

I make sure everything is clearly marked and dated so that I can rotate the food and not have it sit there until it is out of date.

One thing that I noticed when freezing my meals is that the label came off and I couldn't identify what the meal was and how old it was. So I read that masking tape doesn't fade or come off easily and I did that. It's true.

I came across this guide of shelf life for pantry items and I posted it here for our easy reference. Goodness knows, food's too expensive to waste, so this should be a helpful guide. 

 

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 nice thing about it

So we went to the doctor yesterday to get our results from blood tests taken a few days ago. My blood pressure was 140/90 which was slightly better than last time, but still high.

He asked was anything bothering me and I had to tell him I am worried about Chris. Both of us have heart failure, high blood pressure, diabetes and cellulitis plus I have fibromyalgia. 

We both have pitting oedema on our feet and legs and the fatigue that comes from obesity and feeling sick. Dressing and showering is shared in that we help each other and because of exhaustion from showering, we shower every second day, taking opposite days. That way, we can help each other.

Our love language is touch in the form of massaging each other's feet and legs and our speech revolves around spoons and how much sugar is in everything that passes our lips.

We rarely leave home any more except for the doctor or chemist and our rubbish bins go out more than us. The highlight of our day is to discover we don't have any appointments or need a blood test. We are extremely relieved to know we can just stay home and have a PJ day.

It is unusual to call on us and not find at least one of us having a nana nap, particularly if we haven't slept well the night before.

When massaging Chris's feet or watching him sleep upright so that he doesn't feel like he's drowning in his fluid, I become anxious about how ill he looks and I fret that I will lose him.

I can't bear to think of that and when I do, I have to give it to the LORD in prayer and trust that He will grant us more time together.

All this angst does nothing to alleviate my fibromyalgia pain or help me get over a flare and I find myself taking mild pain relief every 6 hours. As the doctor advised.

Our home is able to be company ready in half an hour as it is basically tidy all the time. True, there may be slippers in the lounge or a cup on the table, but this can easily be fixed. I just close our bedroom doors to hide the permanently clean but unmade beds.

We love our home as we feel it nurtures us and even though we only may be gone a few hours when we have to go out, we find we are really looking forward to coming home again.

When we were engaged, we agreed that it would be nice to grow old together and we have. Twenty-five years later, it isn't so nice. But thank goodness we have each other and that's the only nice thing about it.

We both are spoilt girls

With heart failure and certain blood pressure tablets, my feet and legs puff up with fluid. I have pitting oedema which means that the indent when a finger is pressed on the limb, stays for a long time. My heart is not working as it should.

At the end of the day, when we watch TV together, Chris will automatically reach for my feet and gently massage them, rubbing the fluid upward towards the heart. He also rubs my toes which burn and sting with neuropathy from diabetes.

The other night as Chris rubbed my foot, Xena jumped up onto the couch and lay beside me. Not wanting to miss out on cuddles, she put her paw up on Chris's arm, purring loudly. It was a lovely relaxing time and helped lift our depression. 

Neither Chris or I are doing too well physically at the moment. Chris's sugars are uncontrolled and he has fluid on his lungs from heart failure.

Such is the loving nature of this man that he rubs my feet continually, even when he needs his own done. I do rub his feet and legs at least once a day and when I cut his toe nails for him. But it must be said that his ministrations to me are more frequent than mine to him. I simply have no spoons at the end of the day. 

I manage the house with all that entails and Chris knows that my spoons are in short supply, especially with a fibromyalgia flare, and so he seeks to bring me some comfort and pleasure at the end of the day.

Xena seems to pick up on the loving atmosphere and always makes sure she's between us in order to be included in the cuddles. 

She loves her Daddy too and we consider her as our feline child-and because she loves her Mummy as well, she purrs contentedly as she wonders which one of us is a spoilt girl. We both are spoilt girls.

This too will pass

 

It's been nearly a week without spoons. I have absolutely no energy to speak of and have just been focussing on keeping the clothes washed, kitchen clean and cooking.

I suppose it's my fault. With some recent spoons, I probably overdid it and hence the Flare of Flares. It's sort of predictable with fibromyalgia. But I was hoping to break out of the pain/fatigue cycle. I haven't.

 

The doctor has become concerned about my blood pressure being high 160/90 and has been trying to get me to give myself a once a week injection of a drug that's supposed to help me lose weight as well as keep the sugars low. I don't want it.

My feelings are that once you inject something, you have to put up with any side-effects for another week, unlike oral tablets that you have some control over. You can stop taking them: not so with injections. Yes, you can stop using them but the chemical is in your system for a week.

I am sick enough with the antibiotics I am taking for suspected cellulitis in my leg. They are very rugged and have given me thrush as well. But I need to finish the course to heal my leg.

So because I have an infection, I am listening to my body and taking a nana nap if I need it. And I don't feel guilty for napping.

I am trying to keep upbeat and not stress too much. It's hard for me as Chris is suffering with his heart failure as well.

I know better days must come and that's why I chose the picture above. With prayer and leaning on the LORD, this phrase often comes to mind:  "this too will pass" and it will- eventually. 

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 handmaiden, aka 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! 

You just don't know when it will break.

 

Over the last week I have been enjoying a respite from fibromyalgia pain and fatigue. I don't know why it happened, but of course I am glad it did.

During that time I have been busy cooking meals in advance for the next time I have the inevitable flare. It has been working out really well.

I have been carefully pacing myself, allowing 15 minutes of decluttering then resting. Emotionally, it's very satisfying.

Well, I woke up this Sunday morning and have had an unwelcome guest: you guessed it: another fibromyalgia flare. So I guess that I overdid it..So today I will be reaping the benefits of preparing some meals in advance. 

Conversely, though suffering physically, I am not depressed by this: I knew my respite wouldn't last forever. But oh how wonderful it was to have some spoons and to be able to go a whole day without a nana nap!

We Fibromites in regards to spoons and flares, are definitely babies in cradles swinging from the tree tops. We know that at any time the bough can break and we will come tumbling down. 

But it's best if we just learn to go with the flow and try to enjoy the respite: the bough might not break for ages, but you never do know.

Making the most of my spoons

So for the last few days I have been enjoying a respite from fibromyalgia pain. The weather has been lovely and sunny and the warmth has permeated my being and soothed a lot of muscle pain.

I have been decluttering our home and making extra meals to freeze for later on. It has been a novelty and a joy to have spoons to do it.

Aware that it can bring on a flare if I do too much, I have been pacing myself. I do 15 minutes sessions of decluttering with a rest in between. With cooking, I do about half an hour of food prep then take a rest as well.

I am enjoying my new dishwasher too. It certainly makes keeping up with the dishes and keeping my kitchen tidier easier. And that I find, encourages me to cook.

I really don't know how long this respite will last, but I'm grateful each day that I have absence from pain and fatigue.

Until you have a respite, you don't realise how challenging your life is. So for the moment, however brief it may be, I will be making the most of my spoons.

 

My new maid servant

 

So as you probably know, I have had trouble keeping up to date with my dishes. No matter how good my intentions were, by the end of the day I had a sinkful of dishes waiting to be done.

Coming in to the kitchen first thing in the morning, I was always down as soon as I saw them waiting for me to find some spoons to attend to them. I know those who suffer from fibromyalgia like I do, would understand.

As we live in a rented house and we cannot change the plumbing to accommodate a dishwasher, I felt it was a never ending cycle that I couldn't break.

One day I was looking at the price of mobile dishwashers and I noticed that they make a dishwasher that you can park on your kitchen benchtop and I knew I wanted one. So we ordered one online. It's a Devanti.

It came yesterday and I am so pleased with it. It has hoses that attach to the taps in the kitchen sink. It takes a 8 place dinner service and does as good a job as the inbuilt ones. An added bonus is that I don't have to bend to stack and unstack it.

So not only does this dishwasher solve the problem of dishes piling up and no spoons, but saves my back from trying to bend. Ankylosing spondylitis is no joke. 

Anyway, I am overjoyed that the dishes are no longer my nemesis thanks to my new maid servant.

You wouldn't see June Cleaver doing that!

 

So today was a productive day. Apart from doing a few loads of washing, I had enough spoons to prepare some meals to freeze for during the week.

I confess I had a nana nap at "The Beach" aka the couch as the sun was shining and gave a beautiful warmth as I listened to the birds calling through the screen door.

Six more meals have been added to my freezer and I can say that it seems to be working out for me. I don't worry about cooking desserts- I usually serve some fruit with a scoop of icecream or a banana split. Easy.

With fibromyalgia  and other ailments making it difficult to achieve much, I can't tell you how pleased I am with my efforts today.

I feel quite the Homemaker and Chris is pleased as well. Only question is: does it still count if I did all this in my nightie? You wouldn't see June Cleaver doing that!

I am glad I have done this!

So I have been busy cooking those meals and freezing them as I mentioned in my last post. It has been quite an effort for me, but I think it's paid off.

I managed to get 30 meals cooked and in the freezer. I ran out of containers and room, so I had to place the food in plastic ziploc bags. No matter, because they will taste the same.

Last night I got a spaghetti bolognaise out, emptied it nicely thawed, onto a plate and nuked it for 3 minutes. It was great! I added shaved parmesan cheese and some salad and it was delicious! 

Yesterday my younger son turned 45 and we went to his place to wish him happy birthday. It's a 2 hour trip each way, so by the time we got home I was too exhausted to cook. So this came in handy. 

I have quite a few dishes to do today and I want to clean my kitchen well, so if I have enough spoons left, I want to cook four meals of chow mein with rice.

Sitting here talking to you, I feel like I am falling asleep and my muscles are aching badly. So I fear maybe another fibromyalgia flare is coming to pay me a visit. Just another reason I am glad I have done this! 

Hopefully it will work

So I have noticed that even on a rare good day with my fibromyalgia, I still have a dip in energy by 3 or 4pm. Usually that's my time to start preparing dinner. I simply run out of spoons.

Because I don't want to make eating frozen dinners the norm, I decided to try a new plan. I am going to cook a few weeks to a month ahead and freeze the meals.

Any day that I find myself having enough spoons, I will cook a few meals at the same time and gradually build this up to a month of meals in advance.

I know it's going to take a lot of planning, but I think in the end it will be worth it. I actually started yesterday.

Firstly, I went through my fridges and freezers and grouped meats together. Yesterday I made 4 meals each honey chicken with vegetables, potatoes and gravy, then another 2 meals of Mexican chicken with rice. Today I am going to bake the chicken rissoles and kievs and add mashed potato and greens.

The next day, God willing- and spoons available, I am going to cook some stews with a lot of vegetables, using up my pork and beef steaks. 

On the next Spoon Friendly Day, I plan to make up 6 meals with my sausages. I find my slow cookers- I have 3 of them, so handy plus they don't heat the kitchen up like the oven. We are in our summer at the moment.

I am not sure if I can freeze baked potatoes and bacon successfully, but if I can I will do that for lunches.

We will still be having salads with our meals but I buy the packet salads that are already cut and washed, and that not only saves on spoons but helps me with my arthritic hands.

I know this way is not a new thing to most people, but it is something new to me. Hopefully it will work. 

Normally abnormal

We chronically ill women try so hard to do "normal" things. Like look well. Be cheerful. Be patient. Kind. Hospitable. Our family and marriage are our first priority after God. We try so hard to spin our wheel not fast- but at a "normal" pace. 

By "normal", we compare ourselves to those who do not suffer from chronic illness and pain. Or are disabled. We are very careful to keep serving our family but sometimes with the illness that afflicts us: we fail. This often gets to us and causes us to sink into depression. 

Being unable to process that we simply can't act as "normals", we often berate ourselves and sink into the Pit of Despair. We are often judged by "normal" standards, as we simply cannot attend certain social functions like before. If we do, the pain and effort can make us tense and we can make us appear moody unsociable grumps aka the death head at the feast. 

If only "normals" would realise that we are pushing ourselves every day to live a life that not even closely is "normal" like in the days before our health failed. We get so adept at doing this, that we have become quite good at wearing masks to cover the Mask Of Pain. Hence the appearance of being in a mood. 

My fibromyalgia and other health issues have now made it impossible for me to disguise, and I have learned to acknowledge this to people and tell them in advance that my attendance or action or whatever is totally subject to how I am on any given day. 

Basically, I have had to pander to angina, spinal and knee problems, fibromyalgia, polymyalgia rheumatica, and submit to tyrannical spoons by being totally flexible about my appointments and so on. 

People may still misjudge me but that is not my problem. I just pray that the LORD will allow them to see that I am not lazy or unsociable, but am just a chronically ill woman who finds just breathing some days enough effort. 

The LORD knows I am not well, but people take a lot more convincing. I am normally abnormal.   

Put on therefore, as the elect of God, holy and beloved, bowels of mercies, kindness, humbleness of mind, meekness, longsuffering; Colossians 3:12