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I rummaged through the fridge and cleaned out the out of date food.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

He's getting very rusty!

 

So I have been hobbling around with both knees paining me badly and hot as fire.

Last Wednesday I emptied the kitchen garbage bin in to the big wheelie bin for the rubbish collection. 

Wearing my nightdress and short dressing gown, I realised that if I bent over to pick up some of the rubbish that had fallen out, that my neighbours would probably get a good view of my bottom.

The remote garage door was up to allow me to pass behind the car, so I decided to be merciful to them and I bent at the knees to be more lady-like. Big mistake!

Both my knees popped out of alignment similtaneously and I actually gave a short scream! I staggered into the house and had a cry as I searched for my Tramadol which I keep for major fibromyalgia flares.

I  nursed my knees all week and they still are sore and hot and threaten to pop out of alignment at the drop of a hat.

It's hard to do much with knees that both have no ligaments to support them and no end in sight as surgery is too risky with all my co-morbidities.

So as long as I can keep shuffling I am OK but even so, it's more difficult by the day and I walk like Tin Man on the Wizard of Oz. Only now he's getting very rusty! 

 

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.

Xena's still upset with me!

For those of you who follow my sister blog, Morning Cuppas With Glenys, you may recall that recently I had to rescue a sparrow from our little white cat, Xena's mouth.

Although it's been 2 weeks since that rescue, my relationship with her has gone south! She ignores me. When she lays on the floor in front of me, she keeps her back to me and if she walks past me on my computer desk, she presents her bottom to me as she passes me to drink from her drinking fountain on my desk.

I can't work out why she's so upset and why her grudge has continued for so long. She is well fed so the bird affair must have been for sheer pleasure of the hunt. And although the hunt was successful, she didn't get to enjoy the fruit of it...

Maybe she was trying  to please me by bringing this poor bird home like the time she brought home a dead mouse and laid it on my back doorstep.. perhaps my rejection has hurt her feline feelings...

With a very nasty fibromyalgia flare and extreme fatigue, I have been having frequent nana naps and she does still come into bed with me...

But the feeling of companionship is lacking now and I want it back. But how does one say sorry to a cat?

I fear that our relationship is permanently damaged and I am fully expecting her to put out her tongue at me to air her feelings..

I am checking her little claws as she sometimes accidentally scratches me in the night when she's curled up beside me. 

Come to think of it, maybe it's not accidental- maybe she's still fuming... I will never know. What I do know though, is that Xena's still upset with me! 

I am looking up!

So the trip last Wednesday to pick out a bed and walker and then to finish some errands that were necessary saw me with a major fibromyalgia flare.

I had to go in person to chose the adjustable bed that will hopefully help me sleep better and bring down the swelling in my legs and feet. It was necessary to try out the various mattresses and models to make a good choice.

In the end, I chose a non divided queen size medium mattress with a padded bamboo topper. This should help with the fibro muscle pain and still support my sore back. 

After that I had to try out various walkers and walk around with it. It was exhausting.

This pulmonary hypertension is literally sucking the life out of me.  It is harder than ever to walk as my breathing is effected. That, plus the hole in my heart is leaching the oxygen out of my blood cells..It makes me suffer from dizzy spells and I have to grab onto something to stop falling over ..

So today and yesterday I have been sitting down a lot. Normally I sit in front of our kitchen window which is very sunny and has a good outlook. I love watching the white cabbage moths and the birds in our back yard. It sooths me as it's very relaxing. 

It's easy to be depressed. But I don't want to stay there. While there's life, there's hope. And speaking of hope, I have been praying and thanking God that I am His child. The hope of Jesus coming for His Church, His Bride in the Rapture is a real hope to cling to.  

His love and His promise to keep me and bring me to Himself keeps me going. And as I sit here in the window sunlight, you can be sure I am looking up.

I'm in love with my new maidservant

As you probably know, I cannot bend anymore. Thanks to back issues and torn knee ligaments, bending is a thing of the past.

I had a front loader and it was so difficult bending to load and unload it that I opted to sell it and buy a top loader.

As I am 4' 10", I have problems getting garments out of large machines, but I need one large enough to wash my doona and pillow in.

I ordered a 8kgs Haier machine and I am so pleased with it. It is large enough to wash bedding and yet small enough that I don't need a step ladder to reach inside it.

Muscle pain from fibromyalgia and polymyalgia rheumatica is lessened with washing with this new machine as I am not bending as with the older one or stretching to fetch a left over sock in the tub...

It probably is silly to some people that I post about my new maidservant, but it has saved me quite a lot of pain and expense. To wash bedding, I used to have to go to the laundrymat, which is very pricey these days.

It actually is a thrill to be able to add the leftover facewasher or something into the already started load and I love watching the clothes move smoothly around the tub. Unlike the front loader which just made me ill if I watched it too long...

I didn't realise how much I missed the simple pleasures of watching the clothes come clean. I guess you can say I'm in love with my new maidservant!

Helping ourselves

 

I need pain relief. My doctor's on holiday until Feb 9 so I had a phone consult with his doctor wife. I told her my pain is currently off the charts with fibromyalgia, polymyalgia and both knees paining me badly. I asked for a prescription for Tramadol but she said for me to wait until he comes back!

Too long to wait when you are blown away with pain. So I am going to take some Prednisolone for a few days. I have some in the house.

How is it that people with genuine pain issues who rarely ask for help, are regarded with suspicion and treated like a druggie? it's not fair... 

Sometimes you have to go against the medicos and do whatever gives you relief.. (as in taking Prednisolone for some relief) People who are chronically ill and in pain have been known to commit suicide... I can understand why- not that I am going to... just sayin'

We are judged so harshly because of those who rort the system and abuse the drugs.. We have to be our own doctor and help ourselves.

Do you find that too?

We are in need of haircuts but it is such an ordeal getting out that I placed a query online in our local group on FB and a hairdresser who comes to the house pm'd me. 

It will be nice to have my hair styled short. Not sure what to ask for- I can't have a fringe or hair on my nape because with fibro, I itch too much and scratch my skin...

Fellow fibromites,  do you find that too? 

It's all too much

 

So recently I have had chest pain in angina and breathing problems coupled with what I thought was fatigue from an ongoing fibromyalgia flare.

My blood pressure sky rocketed, requiring a visit to a cardiologist who ordered an echocardiogram. My general practitioner told me if the results were bad, he would contact me. And he did.

I got the call last Friday telling me to make an appointment for a phone consult so I ended up speaking to the doctor on Monday. He told me I have heart failure due to Pulmonary Hypertension.

There is no cure for it but there are some treatments. I am already on blood thinners which I will stay on as PH can cause blood clots in the lungs. I already take 7 blood pressure tablets a day.

I often have felt dizzy and this is another symptom of PH and I feel like I can't get enough air in at times. The time will come when I will probably need oxygen at home.

Forget about exercise- I nearly collapse with exhaustion after walking up our long passage to answer the door.

I will know more tomorrow when I see the doctor in person. This is needful because he wants to check out the swelling in my feet, ankles and legs. I suspect I have fluid in my abdomen too. It hurts and is tight like a drum.

I had a blood test yesterday to check on my kidney function and this will be a regular thing.

Lately it's been one thing after another and I am a tad depressed. Prayers would be much appreciated. It's all too much!