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...

A personal battle

Those of us who suffer from chronic pain and illness probably will find that taking a shower is not only an exhausting experience, but a scary one as well.

With spoons scarce and a fear of injuring oneself in a fall or having a heart attack or breathing difficulties whilst under it, we can put taking a shower off for quite some time. Especially as well, during a flare up of fibromyalgia..

With this in mind, I did some reading up about this personal battle and I came across a really informative blog by a hospice nurse. She has some really helpful information which I intend to try...

I have been doing washes at the vanity sink and I have been helping Chris with his bathing as well. We also brush our hair and teeth and change our clothes each day. So we never get to the point where we smell. But it is still important to wash our bodies and hair.

In the past I have bought these bath sponges that require no soap and just a little water. Or none. I have tried these ones called Scrubzz  I found that they fluffed up after adding water so I am trying the foam by Scrubzz

I do have trouble washing my hair due to mobility issues with fibromyalgia and polymyalgia rheumatica. It is simply too painful for me to raise my arms. 

Today I learned of a new Scrubzz Shampoo Caps. Shampoo with water in a cap that does not need a rinse or leak and can be used even in bed.

I am sharing this with you so that you don't feel alone if you also suffer fear of showering. If it helps you it will be worth the embarrassment of sharing this very personal battle.

All things considered

 

These last few weeks have been horrid. My fatigue and pain levels were so high that I had to have Prednisolone to bring down the inflammation from my Polymyalgia Rheumatica and fibromyalgia.

I have been so fatigued that I  have to have a nana nap after breakfast. Without it I can't even function. So I have had to just do the basics to keep our home clean and keep us watered and fed.

My doctor retested me for Lupus and glandular fever even though it came back negative she discovered that I now have stage 3 kidney failure.

She is going to send me to a nephrologist after I have a KUB scan.

I am able to sit here on the computer for the first time in weeks but I have very little spoons still. With my kidneys failing it is not likely to improve much in the near future.

We have to keep a lookout on my kidneys, blood pressure and diabetes. To that end, I have started a new diabetic medication, Jardiance which is more kidney/heart friendly.

Today I have started to slowly wean off the Prednisolone which not only will help my sugars but my weight. It has been a struggle to keep from adding more pounds due to hunger from the steroids.

My pain tonight is not too severe considering I am decreasing the steroids and this is a good start, all things considered...

PS the Jardiance had to be discontinued. It caused me to develop a severe Urinary Tract Infection.

                                   

I am comforted!

 

I am on fire with pain. Literally from the top of my head to the tips of my toes. I don't believe I am being punished for my sin. Jesus took that for me...

But I do believe that we live in a fallen world and I am genetically weak with many inherited maladies from both sides of my parentage.

At nearly 73, I am unravelling. It is just the facts.. my body is failing me. I am in agony and I cannot get medications that will successfully keep the pain at bearable limits. This is because some who abuse opioids have closed the door on help for everyone who truly needs it.

They don't believe that I need pain relief, but here is a brief description of my pain in mostly every area of my body.

My head: PMR temple pain and headache. TMJ causing jaw pain and earache. Fibro brain fog.

My neck: Polymyalgia rheumatica pain (PMR) Hashimoto's disease.

My skin: psoriasis and rash on shins from lymphedema of left leg 

My shoulders: fibromyalgia and PMR muscle pain. Lymphedema in my right arm (from the angiogram)

My heart: angina, costrocondritis. Hole in the heart. Ongoing IHD

My blood: antiphospholilipid syndrome. (Sticky blood)

My lungs: pulmonary hypertension. Only my left one working.

My stomach: gastroparisis, GERD. Navel hernia repair done with mesh which is tearing away from flesh

My pancreas: failing due to diabetes 2

My kidneys: failing and dropping at Stage 3- recently 56 today 45. Makers of 50+ kidney stones

My arms: muscle pain with tearing ligament pain. 

My hands: deformed from osteoarthritis. Trigger finger on left pointer finger.

My back & hips: PMR, fibromyalgia, spinal canal stenosis, ankylosing spondylitis, Scheurrmanns disease. No lower discs left. Coccydynia 

My knees: lymphedema, ligaments torn and a fabella in the right knee. Arthritis.

My legs: fluid from heart disease and lymphedema.

My feet: arthritis, peripheral neuropathy from diabetes, heel spurs

Each day brings more pain. The level fluctuates, but it never goes. And I am still treated like a drug abuser when I ask for pain relief- and this is all verifiable by medical tests.

In fact, the only "help" I have gotten is through a pain management clinic where I was told to play Candy Crush to keep my mind off it. It is a joke. 

In spite of all this, I have had comfort from the LORD. He has helped me to seek truth and set the evil one to flight in moments of doubt. It is easy to wonder if one is being punished during a trial of pain and illness.

Sometimes I haven't even been able to formulate prayers and yet He has calmed my heart and made His Presence felt in giving me a peace.

He has led me to rest in Him, allowing me to drift into a sleep that has seen me restored and refreshed enough to cope during even the most painful of episodes.

His Holy Spirit has reminded me that this too will pass and that Jesus is preparing for me a place of eternal joy and health. And that the suffering I have now will fade in the beauty of His Presence and Holiness where nothing will cause tears and pain and where there is no death.

I have truly felt His Love for me wrap itself around me like a cloak of protection and ownership. 

Sometimes He will bring a song of praise or worship to mind, and I will praise Him in spite of it all. For He is worthy.

Through illness and pain, I have felt a Father's concern and love and I have held on to His Promise that He will not leave me comfortless and will come to me..

The pain is relentless, but so is God's Love and Presence. 

It is true: I am not alone. I am comforted.

© Glenys Robyn Hicks

 I will not leave you comfortless: I will come to you. John 14:18

Hand over the Prednisolone!

I was too afraid to take the 5mg Prednisolone x 3 tablets the doctor gave me Monday for my polymyalgia rheumatica flareup and arthritic deformed hands... PMR has been confirmed.

She said to take it for a week and see how it goes, but I was so scared of the side effects that I wondered if I should avoid it. I know it will raise by blood sugars and I am diabetic. Also, I know it will raise my blood pressure. But still, the pain is rising so much that I really don't have much choice...

I have temple pain with the PMR and I am scared it may go into giant cell arteritis. I had them in my hand that morning, chickened out and put them back in the bottle....

I had a phone consult with my doctor later and I discussed what was worrying me about taking Prednisolone. We discussed the risks and she asked me to try it till Monday when we both go to see her. My ESR was very high (65) so she is pretty sure it's PMR back again. So this morning I took them.

It's evening now and I am exhausted but feel a bit edgy so I am not in bed yet. I know this will sound untrue, but this arvo I have been able to move my thumb and bend my fingers for the first time in months! I hope it continues...

Twelve hours in, in the midst of this battle with pain, it seems like a miracle cure! I am a new fan. I am glad now that I weighed up the pros and cons as I weighed my burgeoning body.

Unable to hold a cake knife, I shouted to my husband, "Hand over the Prednisolone and no one gets hurt!” as I reached for a piece of comforting cake.

I am the victim!

I need pain relief. My doctor's unavailable  so I had a phone consult with another doctor. 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.

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'

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

We are judged so harshly because of those who rort the system and abuse the drugs.. God knows, we aren't druggos.

Yet here I am, suffering indifference and suspicion because of those who abuse drugs. I only ask for help when I can't stand the pain any longer, and when I do I find less compassionate treatment than those who do abuse them.

I carry a constant burden of pain because others refuse stop abusing the drugs I need during times of uncontrolled pain.. In this, I am the victim!

Are you a sacrificial home keeper?

     

                               

Anyone who manages a home whilst battling chronic pain, illness and disability will know that there is a sacrificial element: we are the most selfless and courageous of women. We Sacrificial Home Keepers sacrifice our comfort and exert ourselves beyond limit for those we love.

As a chronically ill woman, I can identify with women who are sacrificing themselves in trying to maintain normality in their home and family. I believe I am well qualified to write about chronic illness as I suffer from a myriad of health problems.

These posts are written as a diary of thoughts and articles through my days as a sufferer of chronic pain and illness. If you share that journey, please feel free to read this and perhaps comment, for illness can be a very lonely and isolating experience.  

Are you a Sacrificial Home Keeper? 

They weren't forthcoming!

 

So Christmas has come and gone and I am totally down and out with a severe fibromyalgia flare.

Our festivities weren't grand and we stayed home. We had family come on Sunday and then on Tuesday and it was fun but exhausting.

Come Christmas Day, we just stayed home by ourselves. I was so fatigued and in pain that we decided that leftover ham sandwiches were good enough for lunch and dinner.

By 9 o'clock Christmas Night I was in bed and stayed there all Boxing Day. I was so tired and stiff in the muscles that I could barely move. Painkillers didn't help at all...

Saturday saw me cook dinner and lay on the couch and that was all I could manage.

Lucky that I don't believe in Santa any more or else I would be sorely disappointed... all I wanted was some spoons for Christmas... and they weren't forthcoming.

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 Rheumatica 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.   

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