I have never been so embarrassed!

 

So as you know, my husband Chris has recently been a week in hospital. We saw many different doctors in the lead up to his diagnosis of Cranial Sixth Nerve Palsy caused by a stroke.

As Chris was not aware of all the medicines he was on, he left it up to me to discuss all medical matters and medications.

I was already stressed and feeling the effects of a fibromyalgia flare. Truthfully, I was exhausted and hurt all over. 

It was an effort to stay awake every day as I sat by his bedside but I wanted to know what was ailing him.

Eventually the doctor in charge of his case came in to update us. I had an important question to ask him and I knew I would forget it if I didn't ask him immediately while it was fresh in my mind. Fibromyalgia does that...

So jumping straight into his conversation with Chris, I told him that my fibromyalgia was flaring and that I had to ask him something important before I forgot.... and I apologised for interrupting yada yada...

Then I forgot. Silence. Expectation. Pregnant pause.

I was so busy explaining my fibro fog and flare and apologising, that the reason for the interruption was over. The question hung in swirling mists of fibro brain fog and I sat red faced and embarrassed.

The doctor looked at me and waited, allowing me time to gather my thoughts and when they weren't forthcoming, he resumed his conversation.

I hate fibro. It rules my life and ruins my credibility as an intelligent woman. It pains me and weakens me, enveloping me in a cloak of weariness that no amount of rest can cure. And it embarrasses me.

I have never been so embarrassed! 

I think I could sleep on the freeway.

We visited the doctor today.  I have extremely high blood pressure which the doctor feels is due to my fibromyalgia pain.  It has flared since the move and I have gone grey overnight.

He is increasing my antidepressants as I am stressed to the max. He believes they may help in my fibro pain. He has not offered anything for pain as yet. 

I feel totally exhausted and I need to help Dianne for the next month as she can't drive.  My spoons are gone before I surface each day.

My exhaustion is such that my legs feel like they can't hold me up. Yet like helping my daughter and looking after my sick husband, there are things that just have to be done.

My grandson walked to our place from school today and found no clean cups for a drink. I told him he will have to wash one out for himself as I have been so unwell that I haven't been able to stack the dishwasher.  

He selected a picnic cup instead of washing one and then asked to be driven home. I felt guilty that my kitchen is a mess but Chris has fluid build up in his lungs due to living with heart failure and hasn't been able to help.

As a fellow counter of spoons, he has to save them for driving Dianne to doctors' appointments and physio, so I do not ask that he helps with the housework.

My extra antidepressants are kicking in and I am feeling tired as we speak. I must straighten my bed first as it is very uncomfortable as it is. I need a good night's sleep.

It is true that you sleep better in a tidy bed. The way I feel right now, I think I could sleep on the freeway. 

A longing for a cup of tea

 

As you know, I have been put on insulin and my sugars are still unstable. My doctor and I are trying to get my sugars stabilised and it's been a bit of a nightmare, to be honest.

On top of this, my fibromyalgia has flared majorly due to us entering our spring, bringing changing weather and muscle pain that is unbearable.

My knees are totally killing me as well and there's not really much I can do. The lymphoedema is progressing nicely, making my legs and arm swell. Again there's not much anyone can do.

The sugars are peaking and at times like these, I feel like I am having a panic attack. It's not, it just feels like one.

My fingers are sore from constant blood glucose testing and I have bruised my stomach where I have injected. This probably so because I am on blood thinners.

I have a raging thirst with the sugars being high and I usually drink loads of tea over the day. I have bought zero sugar soft drinks and cordials, but the horrible after taste mingles with the fruity breath from the burning sugars, so I have been cutting down on them too.

At the moment I am trying to train my taste buds to go without sugar and though getting a big urn for instant boiling water was something I wanted to do, I have put that too on the back burner.

It will stay there until or if, I find a sweetener that doesn't leave a bitter after taste. I hope it's soon because I have a deep longing for a sweetened cup of tea...

It's not about how fast I spin my wheel

 

Lately I have been battling chronic health issues. My fatigue has hung around me like a wet blanket.

My pain levels and fibromyalgia flares are so high that I cannot function properly and this makes it difficult to think clearly, hence I have not posted any new blog entries for quite some time.

I've now entered yet another phase of my life- injecting insulin twice daily to control my Diabetes type 2. As with any new treatments, I feel a bit apprehensive.

In truth, I have been thinking that I will not have many more days of productivity and this makes me afraid.

Walking the path of illness is often lonely and I vascillate between coping with it and struggling.

 It is comforting to remind myself that my worth is not measured in how fast I spin my wheel.

Made with Love

 

I have been watching You Tubes and Face Book reels of people cooking and it sometimes makes me feel inferior as a cook.

All my life, I have a love/hate relationship with cooking and honestly I can say I am no chef!

Because I believe that eating nutritious food is important, and that meals cooked at home often create good memories, I have always tried to prepare tasty meals for my family.

Even with my chronic illness and aging, I still cook for my family and it is always some protein with vegetables.

With fibromyalgia flares and episodes of chronic pain, I often feel like offering something straight out of can or not so tasty, but I remember what my mother used to tell me: it takes just as long to prepare something nice as it does to not bother. 

Accordingly, I always take effort in making something that my family like. I feel better about myself and they know that their meal is made with love.

Because of motherly love

 

Life has been tough lately. Fibromyalgia has come with a vengeance as the weather here in Australia is so changeable. It is our autumn or fall.

A Fibromite will tell you that weather effects your pain. Coupled with some family circumstances wherein we now have another person living with us, there's not only more stress but more work.

To make matters worse, my Polymyalgia Rhuematica has returned and my knees go out of joint frequently. Pain is my constant companion.

In spite of this, I try to keep everything up to date, especially the dishes and washing.

Last week I had to cancel our cleaner because I had an urgent appointment, so today I have my Roomba going around.

I have a dryer full of clothes that need to be removed and put away. There's another one to follow.

For dinner I am planning to cook some steak, mashed potatoes with vegetables and gravy. Then it will be another stacking of the dishwasher and a lay on the couch for a while.

Not for the first time, I am glad I don't have little ones to look after now. I don't think I would manage it. It's a young person's game.

Thoughts and prayers go out to the young mothers who have a chronic painful illness. The only concession I used to make was doing my housework in my dressing gown or bathrobe instead of being in bed.

Kudos to all of us who battle on because of  motherly love. You are the true Sacrificial Home Keepers.

Bells and whistles

 

I was deep in thought on my computer this morning when something started beeping in the house.

Chris called out to me asking what went off. I did a mental check going through the chores I was currently doing. Or I should say, that my appliances were doing for me.

My washing machine was still washing. I wasn't using my oven. My robotic vacuums were fully charged waiting to be instructed on when to start cleaning. My dryer was not in use. The air fryer was not in use....

I asked Chris if he had left the fridge door open... he hadn't. There was only one thing it could be: the dishwasher. It was! 

It was such a relief to locate the beeping sound. Doubly a relief that the dishes were washed. Now we could find a clean cup to have a cup of tea.

I have had many painful conditions attack my body at once- fibromyalgia, PMR, TMJ and knees that keep wobbling out of place and my lymphoedema is so active that I can't wear my usual slippers. My feet and legs are too swollen.

Along with these painful conditions has come the need to sleep around the clock. So I have been remiss in keeping the dishes washed and ready and although I have been washing our clothes, we have been living out of the laundry basket. 

I know that's not ideal, but chronic illness and consequent no spoons has dictated my pace. When one has constant chronic pain, one's attention span is short and the beeping helps bring my attention back to the task at hand. As always, I needed a clean cup to make my tea this morning.

But I digress- back to beeping- I am glad my applicances bring me back into focus and come with bells and whistles..

I won't succumb to it...

 

I am currently unwell. My spoons have evaporated and everything that can ache or pain me, is. I am in a fibromyalgia flare.

We Aussies are in to our autumn or fall but the weather has been erratic with many days over 30C or 86F. With lots of rain to make it humid and steamy. It's bad weather for a Fibromite.

We have air conditioning but I have missed being able to go out into our back garden. So with temperatures forecast to be in the high 20's, I find I will be able to do that later on today.

I have managed to do some basic household chores. Our beds are made. I have tidied the kitchen and done a load of washing. 

There's a tray of sirloin steak out on the benchtop thawing. Later on in the afternoon I will peel some potatoes to mash and some pumpkin to go with it.

The birds are calling me. I am going to change the washing over and put it in the dryer then rest. Every Fibromite knows if you don't rest on bad days, a flare will last longer. 

After the next few chores, I am planning to go outside and read...and I won't succumb to false guilt.   

Part of your tribe

Sadly, I walk the lonely path of mental illness and chronic illness and it can be a lonely path.

However, I have been blessed with a caring and gentle husband who stays beside me and who has my back. It is such a comfort to know that his love isn't conditional on how fast I spin my wheel.

If you have someone like that in your life, consider yourself blessed. In this cold and crazy old world, it's hard to find a good heart.

Thank God for people who support us in our illness or disability- they truly are God given. Cherish them. They are kindred spirits and part of your tribe...

Sufficient to the day

 

As  a woman who suffers from chronic illness and pain through fibromyalgia,  I often succumb to bouts of depression. I have a few tips on overcoming it. 

First and foremost, start your day in prayer. Ask God for the strength to face the day and play worship music to lift your spirit.

Try to be in the moment and take one day at a time. That's all we can tackle otherwise, the sense of failure can be overwhelming. We aren't meant to take it on all at once.

If you try to just focus on the next task at hand and not dwell on the future, it will help your attitude to realise that you have accomplished something. It will then snowball as you progress through the day.

With chronic illness, I set myself just one or two daily goals that are achievable: for me it is wash the dishes and put away the clean clothes. I only focus on those goals that I know are achievable and if at the end of the day, they are done, then I feel a sense of accomplishment instead of defeat.

Nothing depresses me more than a feeling that I have achieved nothing all day. I don't worry that others may say "for goodness sake, it's only washing dishes..." for us in the throes of illness, be it mental or physical- it's a big deal. Delight yourself in small victories.

I find that in setting small goals it knocks the cloud of gloom off its perch and makes me hopeful that I will be able to rise above the depression. Give yourself a high five and see that any job you do is a step in the right direction. It still blesses your family and serves the LORD. 

I think when we are depressed and/or in pain, the desire to go Home to the LORD is strong. After all, we are tired of living in a world of pain and we look forward to our redemption. But in saying that, we still have a work to do until that time. 

As FlyLady says, baby steps. But just taking baby steps lead us out of our rut and it is that first baby step that will hasten our healing of depression and sense of failure. 

  Sufficient to the day is the evil thereof. Matthew 6:34 

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...

Sitting down brings no comfort

 

Over the years of chronic illness, I have noticed that what used to be a reward for spending spoons and being proactive was in having a comfortable place to sit.

Gradually the places that once gave me a comfortable sitting have become objects of pain. My armchair, couch or sofa, typist chair, dining chair and car seats have all become places of torture and there's no reward or rest found in them.

Like wise, my bed also yields no comfort to my fibro effected muscles or my spinal pain.. it can't be the furniture's fault.

I think the fault lies in my allodynia which is pain on the lightest of touch. It is often a part of fibromyalgia and/or diabetes neuropathy. There is no cure.

I cannot take many tablets that are commonly prescribed for fibromyalgia, such as Lyrica so I have had to find something that helps with the pain. 

With both peripheral neuropathy from diabetes and fibromyalgia, and with constant knee pain, I find the only time I can completely relax is when I am lying on my couch and Chris is rubbing my swollen feet. The swelling is from heart failure.

The massage seems to distract the nerve path that interprets pain and replaces it with a pleasurable sensation, allowing me to often drift off to sleep.

I know it's sad that a foot rub is the only help for me at this stage of my life, but it is what it is. And it is good for me as sitting down brings no comfort. 

Cooking with fibro plus fibro bloggers' tips!

In trying to come to terms with my sore hands and lack of energy with my fibromyalgia, I have come up with some new tricks to help in cooking meals.

I have gleaned all the catalogued convenience foods available online and I have found some things that I don't have to peel or chop.

Getting my meat already diced and my vegetables pre-cut and peeled is more expensive, but if it means that we can still enjoy nutritious meals, then so be it.

My freezer has diced onions, pumpkin pieces, diced carrots, broccoli and florets of cauliflower as well as pre-cut chicken, stewing steak that has been diced and diced bell peppers. I no longer peel and chop and mash potatoes, but I use the frozen potato with butter added. It is worth the expense.

I have a jar of minced garlic so that I don't have to peel the cloves. Our pantry has spaghetti, penne and rice that cooks in the microwave in 90 seconds. I use that because I no longer can hold the colander to drain it. Our fruit is canned as I can't peel apples or oranges.

I keep our butter in a dish in the pantry because I cannot hold the knife to cut through hard butter or to scrape it. My diet lemonades now come in bottles because I cannot manage the pull rings and my tomato sauce is in an easy pour container for the same reason.

I am grateful for anything which will save my hands, like my electric can opener and my dryer as I no longer can hang washing out to dry. You don't realise how hard pegging something on is until your hands are too weak to push on the pegs.

But one simply has to go on and like all good Sacrificial Home Keepers, I do. It just takes a bit more planning and a lot of research to keep at it when you are an old hand in need of new ones.

Here’s what works for my fibromyalgia blogger friends

• Cynthia from The Disabled Diva shares her top tips
• Shelly from ChronicMom blog shares her #1 recommendation
• Australian Sacrificial Home Keeper on tricks to help cooking  
• Mandy and Michele on their preferred medication
• Lee Good, who is discovering what works to help Fibromyalgia at Fibro Files 
• Katie from Painfully Living shares what’s worked for her
• Sue at Rebuilding Wellness blog shares her top tips
• Carrie shares her top tips at My Several Worlds blog
• Bettina shares what works for her in the hope that it will work for you
• Nikki from the Brainless Blogger shares her top tips
• Bethan from Hello Fibro Blog shares what she’s learnt since diagnosis
• Cynthia from My Inspired Fibro Life shares her tips
• Donna over at Fed up with Fatigue writes about the beneficial fibromyalgia treatments she’s used since diagnosis

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.

She is not afraid of the snow

 

Recently Chris and I have been stocking up our fridge, freezer and pantry. The world is a very sad place and nothing is sure...

We aren't living in fear- we just think with the price of diesel, strikes, problems in distribution and so on, that it would be prudent to have some back up food in the house.

So far we have enough groceries to last us about six weeks on a planned menu that doesn't use all our reserves at once, yet nourishes us. I have a few extra packs and tins of cat food for Xena.

In line with this, I have been getting prescriptions filled promptly and buying extra diabetic supplies. Again, enough to last us about six weeks. And that includes pain killers for my fibromyalgia.

Already we have had distribution problems with shipping containers banked up on wharves and no workers willing to unload them. With all our various health issues that require many tablets a day to control plus insulin injections, we are aware that having a few weeks in advance if possible is also prudent.

My antidepressants weren't available for months and if I hadn't been wise, I would have had a meltdown. Fortunately I had a couple of boxes of them in obeyance. 

Whilst I don't advocate stocking up because of fear, it is not wrong to anticipate difficulties in obtaining basic supplies and acting accordingly.

© Glenys Robyn Hicks   

 

She is not afraid of the snow for her household: for all her household are clothed with scarlet-Proverbs 31:21

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. 

Not falling off the vine

 

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

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

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

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

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

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

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

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

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

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

We need to share the load

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

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

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

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

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

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

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

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

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

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!