We have to live through the bad times

Every day is precious no matter how much you ache or hurt. Life has to be lived rather than endured.

Realising how short life really is should encourage us to live it with courage, taking hard times as

a challenge. And living with fibromyalgia is a big challenge.

Not every day will be sunshine and roses, but those days will help us appreciate the days that are.

Remember too, we have to live through the bad times to get to the good.

 

 

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I rummaged through the fridge and cleaned out the out of date food.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! 

When an aspirin won't fix it

                                 

When it comes to Fibromyalgia many people – men and women – have reported a reduction in their libido due to the sometimes chronic nature of the condition. Sometimes Fibromyalgia sufferers can feel perfectly well and are willing to make love but a ‘flare-up’ can put paid to such willingness.

The sheer unpredictability of the condition is such that it can leave one or both partners feeling as though they are not wanted and that perhaps the other partner is making excuses; this is simply not the case.

Sufferers of Fibromyalgia, especially in its chronic form, find it difficult to make love because of the levels of pain they have to endure. Making love requires a considerable amount of bodily movement and if the trigger points flare up then this movement can be painful or at the very least uncomfortable.

Another problem with Fibromyalgia is the way in which an individual’s body weight can fluctuate; this too has consequences on the libido, making the sufferer feel as though they are unable to perform and instilling in them a lack of self-confidence which manifests itself as a lack of libido.

It is important to emphasise that a lack of libido can be turned around either by reducing stress and anxiety or by changing one’s daily routine. Your doctor will not necessarily prescribe any medication to help combat this problem as there is not really much that can be done physically about the condition.

I think it is very important to reassure your husband that you still love him even though you are hurting too much for intimacy. In areas of chronic pain and illness, communication must be open so that there are no silent doubts about whether you as a wife, still love your husband.

So important is this area of intimacy in marriage, that I would suggest that you be willing to try to accommodate your husband at any reasonable time, instead of just at night when you are understandably tired out. If lovemaking is simply impossible, remember to caress and cuddle your husband. author unknown

Remember to be demonstrative and vocal with letting your husband know you love him. He will most likely be feeling anxious that he can't help you in your suffering. Fibromyalgia flares can't be fixed by taking a few aspirins.

 

My beloved is white and ruddy, chief among ten thousand. Song of Songs 5:10

It's going to be a PJ's day

 

The rain is pouring down.  Xena is still asleep on my bed.  Chris is watching TV and I have got the breakfast dishes  in the dishwasher. 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 Kingfishers 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 onto the decking 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.

The spirit is willing

 

So I decided to take a bath today. No mean feat when one is chronically ill or disabled. It turned out to be a big mistake.

Chris helped me get into the bath as it's pretty high. I no longer have my bath lift  so that made things a bit harder again.

It was so difficult to make my knees bend enough to sit down in the water, but when I finally was in, the water was so soothing. I lay there for about 40 minutes, just luxuriating in it.

The loofah did a marvellous job of exfoliating my body and once again, I was so glad to actually be able to bathe.  Then came the hardest part: getting out.

I tried every way to get out without kneeling on my sore knees, but in the end, I had to. There was no other way. It hurt like crazy!

Today my knees are aching and it is with sadness that I realised-(not for the first time) that it will have to be showers from now on for me.

I have no painkillers here so I am just taking paracetamol... which is pretty much useless for strong pain.

So I have made a short list today for chores I want to do.

I have put away the online groceries that came this morning.

I have done a load of washing that is in the dryer.

I have a slow crocker full of pork sweet and sour rice for dinner tonight.

After all these years of chronic illness, mainly fibromyalgia and shuermanns disease, I think I have worked out how many spoons I can save during a bad day.

As it is written," The spirit is willing, but the flesh is weak!" Matthew 26:41  Indeed it is! 

I am beyond tired!

 

After a good day yesterday, I ended up flat on my back. Actually that is in bed. My doctor said my BP was too high at 187/87 and he put me on more meds. I planned to do some organising of my wardrobe but it was not to be.

Half an hour after taking my BP medication, I found I couldn't keep my eyes open, so I went to bed. Woke up a couple of hours later just in time to cook dinner. Dinner wasn't very exciting- a steak sandwich.

Tonight I had to take my usual dose of BP tablets and I am just about to go to bed. It's so frustrating! But with chronic illness, it is what it is!

I have to go back to him in two weeks. He is going to discuss giving me Endep for my fibromyalgia pain.

Unable to sit for long, I have culled a lot of FB groups and deleted my Twitter account. I want to reserve whatever spoons I have to look after Chris and our home. I need to spend more time with him and not on the computer.

This dance with chronic illness has it lead all the way. It steps on your toes and cramps your style. It holds you captive. I just want a break from it. I am beyond tired! 

It's a pain!

 

So the day has started off without any appreciable spoons. However, I have purposed to do some chores in the house regardless. Simply because they have to be done.

With the last two days slack on housework, there are dishes and washing and some other chores that are shouting to be done.

My sugars are still 10.4 this morning in spite of taking the new diabetes medications for a week. So I accept that I am never going to feel really well. Fibromyalgia and angina coupled with back pain also seem to do that. 

So I am going to just concentrate today on the most crucial homemaking tasks: having clean dishes and cups and some clean clothes and towels.. No lists today, this is all I can manage.

So today's list of to do's are:

1. Soak and wash dishes and put away after air drying
2. Catch up on the washing and put it away after the dryer has finished
3. Cook some lamb stew in the slow cooker for dinner

Granted it's not much to do, but my body feels like it's trying to climb Mt Everest. But enough procrastination: I must push on. No fairy godmother is coming- I'm it!  

It's mundane. It's frustrating. It's tiring! But it is what it is!  It's chronic illness! And it's a pain!

A big part of my life

It's 11.30 Saturday morning here and already we have been to have blood tests, come back and had breakfast and I have done a load of washing, folded clothes and stacked the dishwasher. 

They weren't able to get blood from me today so I have to come back Monday. This in spite of drinking water beforehand. 

Chris is sleeping and I am thinking of having a nana nap as I have no spoons left. So tonight I will be cooking pork chops with mashed potato and salad. I may serve a fruit salad for dessert.

The fibromyalgia is flaring and I am aching all over. I haven't recovered from the move yet. In spite of knowing I could/should do some more around the house, I know that I need to rest or tomorrow will be a repeat of today. Pacing and resting are now a big part of my life since fibro.

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.

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! 

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

I just have to pursue it.

 So with a horrid year last year, I was quite happy to see the end of it. I messaged my friends and family and wished them a happy new year, then turned my phone off and went to bed.

It was only 11 o'clock, but I was exhausted and had no spoons left. The weather was really warm and I decided to forgo my electric blanket. With the help of a Tramadol, I managed to quell my fibro and back pain and soon fell asleep.

I woke up at 2am and realised that it was January 1st. Not that it makes much difference what year or day it is- for Chris and I one day is much the same as another. We stay home mostly.

This year, I am training myself to live in the moment. That's all we are promised anyway. I have worried about what lies ahead this new year, but I am going to stop thinking too far ahead.

I plan to read more of the Bible and saturate myself in uplifting read and videos. I am going to try to live with hope and not dwell on negatives.

The eternal optimist, I am going to believe that I am going to have less fibro pain and get more done. I mean, if one thinks only of horrible things it will ensure that I just exist and don't live.

I don't want to endure next year, but enjoy it. It's a big ask, but it is possible. I tell myself it's possible to live an abundantly happy life in spite of pain. I just have to pursue it. 

I need him awake and aware

I was a bath a day girl all my life. It just was so nice to soak and think of pleasant things as the warm water soaked away the aches and pains of the day. This was great until my knees packed up and I couldn't get out of the bath.

So obviously the next thing to do was to become a shower girl, and that worked for a while until fibromyalgia took over my life and sucked my spoons dry. I simply had no energy after a shower but that wasn't the worst of it.

No, the worst of taking a shower for me has now included panic attacks whilst in the cubicle. I am so unsure of my knees being able to hold me up that I hyperventilate. Not good when you have limited oxygen in the first place thanks to a hole in the heart and asthma.

I have tried all the hacks for taking a shower safely and peacefully: I have a shower seat, I turn the exhaust fan on so that the steam isn't too bad, I do not have the water too hot. But it doesn't really help much. 

Once the adrenaline takes over and my breath is cut short, the angina kicks in and my heart pounds like a sledge hammer. So I try to not have water running over my face as this sets the panic mode off.

I have managed to shampoo my hair with my back and face away from the stream of water and I have a very quick wash routine so to ensure my ordeal has been successful as well as quick.

In the old days, Chris used to help me shower, but alas, with his heart failure and chronic fatigue, he has enough trouble showering himself and I don't want him exerting himself on my account.

I have got a shower down to a reasonable time and I can be in and out in 10 minutes- out as in dry, powdered and in my PJ's. All I have to do is dry and brush my hair.

Because my spoons fail me really quickly, I brush my teeth before the shower and have my ablutions at night. I can just stagger to bed if need be. And sometimes it is needed- a shower in the daytime can knock the wind out of my sails for the entire day at times.

I admit it galls me that all my little pleasures like bathing and showering make me feel like I have run a a marathon, but it is what it is. What was a routine like breathing every day is now planned with precision around Chris's sleeping pattern. I need him awake and aware in case I fall. 

Comfort from my kitchen

The weather has been shocking today and is forecast to be the same for four days. It's been so windy today and last night that I thought our tin roof was going to come off. It seemed to be lifting off. The rain just keeps pouring down with occasional hailstones. I think we are getting some of the tornado that came to Sydney.

I have been suffering from severe fibromyalgia pain, coupled with arthritis in my spine, fingers and knees. I have tried not to go to bed as I don't like sleeping my life away, but I will  have an early night.

Today seemed like the perfect day to warm up with some comfort food, so I made a slow cooker full of Jewish Penicillin.   Not only is it nourishing, but tastes great. I find it so comforting on days like today.

I had planned to do my overdue dishes today, but my spoons were vanishing as fast as my soup. Chris stacked the dishes for me and they are going to be waiting there till tomorrow now. I am planning on taking some Tramadol and go to bed about ten. 

I know I write a lot about fibromyalgia flares, but I think it's just the same long drawn out flare. Maybe this will be my new normal forever! I hate to think like that, so it's off to grab another bowl of comfort from my kitchen! 

Tyrannical spoons

I woke up with high hopes of doing some baking this afternoon. It's been a few months now since I bought a food processor and I wanted to make Chris some sultana muffins with it.

But life had other plans and I had to handle some juggling of bills and made the necessary phone calls and then I took a shower. That's where the day spiralled out of control.

It took me forever to get showered and by that time, all my energy had been sucked off my spoons. I have barely enough to cook dinner.

My fibromyalgia seems to be always there, no longer flaring but constantly making me aware of every movement. Even my eyes seem to ache. Apart from physical torment, it now teases me with fleeting glimpses of spoons that disappear as soon as I flex a muscle. Most disappointing.

So apart from a few dishes washed and sorting out what to have for tea, nothing much as been accomplished.

She's a tyrant, Fibromyalgia. She dictates my days and even my nights and tantalises me with false promises. Ah well, it is what it is.

"The best laid plans of mice and men go awry!" comes to mind as does the scripture that says "a man's heart plans his way, but the Lord directs his steps!" 

So today is not a day for baking. Thanks to my tyrannical spoons.

Tomorrow may be better

 

So Friday night I developed a raging toothache. By Sunday I was so desperate for relief that I was seriously considering going to the ER at our local hospital.

I only had Panadol or Tylenol here and it wasn't helping at all. Waking up Monday morning, I rang the emergency department in our local dental hospital and they made an appointment for me that afternoon.

My tooth was cracked, exposing the nerve, so it had to be extracted. It was a difficult extraction and my jaw had to be planed down as it had jagged edges after the tooth was removed.

The dentist would not prescribe opiates for pain relief and told me to see my doctor. Fortunately for me, he did a phone consult and left a script for Tramadol for us to pick up. Chris got it dispensed for me and it was a life saver.

With my knees both paining me and a fibromyalgia flare brought on by the extraction, I felt like I was drowning in pain. So yesterday I spent most of the day in bed.

Today, I have a lot of dishes to wash and owing to how I feel, it will be the only job I make myself do.

I will make some Jewish Penicillin for dinner tonight and we will have a salad sandwich for lunch.

Hopefully tomorrow will be better.

How to work without dropping from exhaustion.

Sometimes we can get so busy trying to complete our long list of tasks, that we forget to take time out for ourselves during the day.

By time out, I mean taking breaks to keep hydrated, to eat a meal, attend to the calls of nature or to just sit and contemplate one's navel or day dream.

It's important to our mental health as well as our physical well-being.  When we are chronically ill with fibromyalgia for example, we need to learn to pace ourselves between tasks. And here I must say, one should just enjoy the rest break and not feel guilty for taking time out.

It takes a bit of planning to feel productive as well as pacing oneself in order to not suffer too greatly the next day. Here's what I do...

• I write down just the main and most important things I want to achieve by the end of the day. 

• Then I pencil in how long each task should take. 

•  I work through that list with breaks in between. 

• I allow 15 minutes between tasks. 

•  When I see how soon I can be finished, it usually motivates me to get going. 
  

• Visualising how the house will look better after helps too.

• Using Sylvia's lists can be helpful too.
  

Working out how long the list of tasks should take ensures that regular rest breaks are taken to ensure you don't run out of spoons before the list is complete.

There's nothing nicer than reaching the end of your list and feeling a sense of accomplishment without working till you drop from exhaustion...

Beauty is all around us

As you probably know, we love cats. We used to have two white cats, but Snowy passed at age 14 and we now have our little white cat, Xena left to love. Both of them were rescue cats.

Xena has brightened my day. She is so amusing. Thinking she is invisible, she crouches after the many birds in our back garden, only to dash back inside when they gang up on her and chirp her away.

She is not very brave or wise. Her white fur is visible to everything. Her demeanour is the yellow of a coward. This is the same cat who squealed when a mouse ran over her paw! She's such a girl! 

With isolation, one has time to watch the antics of cats and birds, and to enjoy the beauty that is all around us. For in spite of pestilence and mayhem, there is still beauty to be found.

It does help me with this current fibromyalgia flare, to go to "the beach" and let the sun play on my skin and listen to the birds and watch our cats' antics.

Not many people can find much beauty in the world today, but I make a point of looking for it- and when I find it, I make sure to thank the One Who made it, and give thanks.

Gratitude and thankfulness in the midst of pain goes a long way in coping mentally with it all. 

Try to take some time out and focus on the good that remains in this sad old world. There is beauty all around us.

Spitting chips!

     spit chips: 

slang To be loudly or vehemently angry. Primarily heard in Australia.Everyone's spitting chips over the recent tax law now, but in a month's time, no one will even remember that it happened.

Although I did get out of bed today, I haven't achieved much. I have managed to sort my dishes out from last night and they are soaking in hot soapy water in the sink.

The washing is still in the hampers, glaring at me when I pass them by, ignoring them as I go to the loo. They will keep! 

I have some minced steak thawing on the kitchen bench and I have no idea what I am going to do with it tonight for dinner. Pot luck! 

How I feel is pretty much the same in the graphic here. I am whacked and in pain that makes it hard to sit and talk to you. My neck and shoulders are killing me.

The rain is really heavy and the temperature is cold. Totally to be expected as it's winter here in Australia. And where we are, it even snows! 

My sister and daughter are Fibromites and are suffering as well, so maybe it's the weather changes..

My plans for baking and icecream making went out the window yesterday and certainly aren't in today's plans. Instead, I am here mentally shaking my fist at fibromyalgia and, sad that I can't do the few things I planned for today, I am sitting here, spitting chips! 

On a wing and a prayer

I have not been that well lately. The rain and cold has exacerbated my fibromyalgia and my spinal problems have come back to make sitting difficult.

To be honest, at the moment, there's not much I can do that doesn't cause pain somewhere. My whole body hurts.

I have dishes to do and I plan to make a quiche and salad for dinner tonight. That's all.  I will be turning my electric blanket back on soon and retreating to bed.

Even staying up long enough to do these few things is only going to happen with prayer. I am like a war plane struck down and trying to coast to clear land. On a wing and a prayer!