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. 

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! 

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.

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! 

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

Ya gotta laugh

                                             

I got some of things I wanted to do done, but alas, it came with a cost. I have another flare of fibromyalgia.

I can hardly move and hurt everywhere. It doesn't help that we have thunderstorms on the horizon  either. So today I have only washed my dishes and I will cook dinner. It's all I can manage.

All our bedding is washed and dried and when our cleaner comes Monday, she will put more clean sheets on. I just did the minkie blankets and our doonas.

I must say that drying the minkie blankets in the dryer has given them a slightly grey tinge, but they are still soft and smell great. Most importantly, they are clean.

My plan for the remainder of the day is to cook bangers and mash for dinner. I will take some Tramadol because my knees are hurting as well as the usual fibro pain.

Xena was outside for a bit and was attacked by a horrible Siamese cat who stalks her. I ran to help her and damaged both my sore knees. I am in too much pain to get down the steps and walk to the back garden to pick up my slipper that I threw at it. 

That Siamese cat didn't want to budge and would not leave the back garden. He's stubborn and has worn out his welcome. Much like my meniscus pain in my worn out knees: joking.  Ya gotta laugh. 

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. 

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.

Just living is a physical ordeal.

 

Lately I have been finding it difficult to be joyful. My fibromyalgia doesn't get better, my knees are paining me, my angina's worse and I have had bouts of asthma.

Sitting for long periods hurts my back, and my eyes and face and general skin is dry, but I need to keep the house warm as the cold winter temperatures aggravate everything.

I have tried returning to a more realistic sleeping schedule, but I find even if I go to bed at a reasonable hour, I still wake up a couple of hours later. Then I can't get back to sleep for another 4 or so hours. 

I am tired, people. Tired of all this pain. Trying to keep it all together. Trying to live a "normal" life. I mean taking a shower without assistance or cooking a meal from scratch or hanging out some washing should all be within the bounds of normality for a homemaker. Not so for me.

I wear tiredness like a heavy saggy wet cloak, and I never wake up refreshed. My circadian rhythm is all out of whack and I can't restore it. Through no choice of my own, I have become a night owl.

With Chris being ill with his heart failure, he doesn't sleep well either and sleeps sitting up. He starts off in bed, but graduates to his recliner armchair.

The fluid in his lungs makes him feel like he is drowning, so that necessitates sitting up to sleep. It. is. what. it. is... But I watch him struggling for breath and I feel that I am losing him by degrees...

I have thought about trying to be upbeat and falsely present myself as someone who is coping with all this, but if I did it would be a lie.

So apart from a nana nap later, I am planning to spend some time in prayer and worship. Hopefully, that will give me the strength to emotionally and spiritually rise above the physical ordeal just living creates.

You better go check yours out!

 

So as you know I have been having problems staying awake. Even after 8 hours of sleep, I battle keeping my eyes open during the day.

This has had me perplexed and I have blamed my fibromyalgia, which still may be a part of what I have been struggling with, but certainly not all.

Going through my refrigerator last week, I sorted through the side top shelf on the door where I keep Chris's insulin injections and my thyroxin. Checking the dates, I was shocked to see that my thyroxin was out of date by two months!

I quickly discarded them and put a new week of indate tablets in my pill container for the week. No wonder I have had peeling skin off my face, hair loss and fatigue...

It's been 6 days so far with little change, but I would expect the synthetic thyroid hormone to build up in my system soon... I am hoping I don't have to wait long.

I am so switched on with medications and foods and so on that have a limited shelf life, but this time, it fell through the cracks...

Considering I have been battling a long term fibromyalgia flare for about 10 months... yes nearly 11 months since moving here, I guess I have to cut myself some slack. Nevertheless, when I discovered the out of date meds, I did tell myself  that I am an old sausage! And I am!  You better go check yours out! 

A spoon is a spoon!

 

So my polymyalgia rheumatica has kicked in again, and coupled with a fibromyalgia flare, the pain is just excruciating.

I have decided the pain warrants some Prednisolone so I took 25mg of it these last two mornings. It makes me feel a bit antsy but I can now bend my neck, lift my arms to brush my hair, and the pain around my temples and headache has gone, along with the TMJ.

It is risky taking Prenisolone, but I had to weigh up the pros and cons and decided that I simply couldnt bear the pain any longer. 

A happy consequence of it is the fake energy has made me channel it into housekeeping and my house hasnt looked better! 

Today I have run the Roombas, washed the clothes and cleaned my kitchen. I am going to do sausages in the slow cooker for dinner tonight.

The steroids are elevating my blood sugars as I am diabetic. It's making me feel drowsy. I can see a nana nap in my future if the Pred will allow me to sleep.

I really dont care where I get my energy from these days: fake energy from steroids is good. After all, a spoon is a spoon!

No spoons required

So yesterday was a really good day. In spite of my fibromyalgia flaring and angina. But it's because of those things that today has been so good.

My diary showed a doctors' appointment to attend, then the chemist for scripts and then the inevitable grocery shop for the week. A full day for a chronically ill person.

I thought it through and decided to ring the clinic and change a face to face consult with a phone one. Then I rang the chemist to advise them that the script I owed them for some blood pressure tablets would be coming in the afternoon. Then I arranged the medicines to be delivered to me.

Then grabbing a cup of tea, I did my online shop and arranged delivery of it for tomorrow. And I played Candy Crush until the doctor rang me.

He arranged for the escripts to be sent directly to our chemist. I made another cup of tea as the doorbell rang- the girl with our medicines delivered them very promptly.

Cooking a simple meal, I found I had energy to work on my crochet project until bedtime. I had plenty of energy as all the errands had been done with no spoons required.

I am no longer a bunny!

 

So Easter has come and gone and so have all my spoons! I have been under the weather all over Easter and have a constant fibromyalgia flare, coupled with spinal pain.

With moving the homemaking help for the elderly stopped and it would take a long time to get it all arranged. We have decided to enlist a woman to clean for us fortnightly again.

This lady is very efficient and friendly as well and although we enlisted her for once a month cleaning, the truth is I need her fortnightly. I can maintain our home in between her visits, but with once a month, the house is needing a more thorough clean and therefore took more than the two hours I hired her to clean.

As always, I hate needing to have help these days, and Chris is too unwell to help me. It is what it is..

You would think that with having back pain for forty years and fibromyaglia and angina for twenty, that I would be more gracious to myself. I should be accepting my lot, but being a woman, I still find my perceived worth as a homemaker is dictated by how fast I spin my wheel without help.

So with my 70th birthday here in a few weeks, I am just going to have to accept my handicaps and be merciful to myself.

I should be glad that I have a husband who agrees to hiring help. A lot of women don't. So I will just stop the pity party and enjoy this season where we can afford her...

And also, when she comes, I am not going to clean the house before she comes... I am a  perfectionist, but no longer... where housework is concerned, I will get the help I need. I'm no longer a bunny!

© Glenys Robyn Hicks

God is my strength and power: and he maketh my way perfect. 2 Samuel 22:33

It gets very tiresome!

Over the last few days, I have had a cancer scare with someone dear to me, and my fibromyalgia has flared and with the pain comes that most embarrassing symptom of all: fibro fog.

I was talking on the phone to my sister, and was telling her something that had happened, but I never got to finish what I was saying. I got distracted mid-sentence and never finished the tale.

Unsure of her knowing of whom I was speaking, I digressed in a discussion on who he was, and when I tried to remember the point of discussion- I simply forgot.

Being that my sister also suffers from fibromyalgia, she understood-otherwise it would have been totally embarrassing. But there have been times in the past when I simply can't think of a word and flounder.

Like the time I was at the doctor's and was telling him something important. I simply forgot a word and there was a pregnant pause as I floundered to find it- embarrassment made it more difficult to find. He just looked over his glasses at me until I ventured to say that my fibro was flaring and this isn't usual for me. I am usually verbose.

Many times during a fibro flare, I can be reading something and it just doesn't sink in. I reread it and reread it before it is clear what I have just read. Or I can be paying the bills and have to check upteen times before I pay it to make sure I have the correct amount and I must check again to whom I am paying said correct amount. 

This coupled with the physical pain and fatigue make for a very challenging life during a fibro flare. It has the propensity to sap you of your self confidence. It can make you doubt your sanity. It can scare you to death as you worry about your competence to even run your own life at times.

I would not wish this on anyone: the pain. the fatigue. the confusion. the sapping of confidence. the insomnia. the judgments.

Many times I cannot attend church or read my Bible and I sense that there are some who think I am backsliding. Far from it. I am simply too exhausted.

All these things are a Fibromite's lot and no one seems to understand if we give in to a rare moment of snappiness or pique. It's just that the whole fibro thing with pain 24/7 gets one over it very quicky and it gets very tiresome! 

Today's to do list:

• Washing
• Clean my kitchen
• Cook chicken risotto for dinner