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! 

It's a good thing, fibro or not!

 

Chris and I have both had glandular fever which lasted for months. He is being checked for fibromyalgia as he has every indication that he has, even though it is mainly a female disease, it can effect men. Here is an article written by a doctor about that link....

Epstein Barr, the virus responsible for glandular fever or mononucleosis, has been linked to the development of fibromyalgia – a chronic, painful condition of the muscles and connective tissue.

Fibromyalgia sufferers are mainly female and report chronic widespread pain and a heightened and painful response to gentle touch. One of the most important criteria to determine whether or not you may have this disease is significant pain in very specific areas of your body, including:

* Inside of your elbows
* Your collar bones
* Inside of your knees
* Your hips

Usually these locations are symmetrical, so you’ll have pain equally present on both sides of your body. Experiencing significant pain when someone presses on those areas, on both sides, is indicative of this condition.

Other symptoms can include fatigue, sleep disturbance, anxiety, bowel and bladder problems, difficulty swallowing and joint stiffness.

Conventional medicine offers no cure for fibromyalgia, although there are treatments like medication, exercise and behavioral interventions that can reduce symptoms.

The natural approach to treating fibromyalgia is to re-balance the immune system which may have been damaged by the effects of the Epstein Barr virus. It is also vital to relieve symptoms through nutritional intervention, graded exercise, stress management and re-establishing good sleep patterns. Let’s have a look at some of these natural treatments for fibromyalgia:

The mineral magnesium is a natural muscle relaxant that is showing promising effects on the pain of this condition. It should be taken as a powder or capsule along with magnesium-rich foods like fish, avocado, raw nuts and seeds, soybeans, green leafy vegetables, brown rice, apples, apricots and grapefruit.

Malic acid is also often low in sufferers and should be supplemented. Malic acid is found naturally in fruits like apple. It often gives unripe fruit a tart or sour taste.

To help relieve the fatigue seen in fibro and Epstein Barr, vitamin C and the B complex are recommended. Anti-inflammatory foods like fish oil, zinc, ginger, turmeric, pineapple and paw paw can also help.

Restoration of normal sleep patterns is an essential part of the recovery process. Herbs like valerian, skull cap, hops and chamomile are excellent. Epsom salt baths which are naturally high in magnesium should also be taken nightly before bedtime. These baths reduce muscle pain and tension and help ensure a good night’s sleep. Gentle exercise during the day – either a walk, swim or stretching exercises can also help you sleep better at night.

Diet wise, I recommend my Epstein Barr, CFS and fibromyalgia patients follow a low carb, high protein diet based around good quality protein foods and plenty of fresh leafy greens and other vegetables. Sugar, grains and the nightshade family of foods like tomatoes, eggplant, chilli, potatoes and capsicum, should be eliminated as they can trigger pain and soreness in the fibromyalgia patient. Remember too to drink plenty of pure water – at least 2-3 litres a day...... author unknown

I have to add here that I could never drink 2-3 litres of water a day and current medical advice is that we only need about 6 glasses. Too much water intake can cause more problems and we have enough to deal with already. 

We are already both on fluid tablets due to heart failure. But apart from that, we are going to implement some diets changes and other suggestions.

With us both suffering similar pain issues, it is easier to understand each other and offer love and support. Which is a good thing, fibro or not! 

Taking the pressure down

 

There's no nicer time of the day than the evening. All the angst of fighting pain and battling fatigue with fibromyalgia, diabetes, angina and spinal problems is over for the moment...

Whatever the worry of checking and medicating sugars and blood pressure is has been and gone..it is what it is.

As the sun goes down and the moon rises, there is the hope of a restful sleep and whatever chores were meant to be done are either completed or waiting for tomorrow.

We can rest and wind down, enjoying whatever simple pleasures we have left after the raviges of pain and illness. Whatever helps us unwind and take the pressure down is welcome and wanted..

The drapes are closed, the fire lit, the kettle has recently boiled and a tea tray awaits our attention..a final sip of our favourite beverage accompanied by quiet reflection and conversation.

One knows that the morning will bring its own anxieties that life struggling with chronic illness brings, but for the moment the hope of a restful night's sleep resides in our bosom... hope is what keeps us going.

As we lay at last in our bed awaiting sleep, we can reflect on those things that light the wick in our candle of hope. Those things that have given us comfort and peace throughout the preceding day..they are worth remembering...

Being thankful for the good things in our day helps us get a better sleep and is a way of taking the pressure down...

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!

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

 

It still is what it is!

You may remember me telling you that I bought a bath chair lift so that I can have a bath. I was so overjoyed when it came.

Unfortunately it didn't work out for me and I only used it twice before I sold it. It came down to awkward plumbing and knees that don't work anymore. 

To say I was disappointed would be an understatement, not only disappointment that I couldn't bathe but also for the fact that it cost me $870AUD.

It was still immaculate and under warranty so I decided to sell it. I did after a couple of weeks, but I sold it for only $400AUD with ebay fees of $53.90 so I didn't make much back on it. 

On the bright side though, I did find that the shower in the main bathroom has an easier accessible shower stall and better water pressure than the ensuite one. 

And speaking of showering, I have purposed to have it at night now due to my spoons being scarce with my latest fibromyalgia flare. It doesn't matter so much if I run out of spoons if I am on my way to bed anyway.

Victoria has been experiencing very wild weather with lots of rain and thunderstorms. The pain in my joints and muscles gets too much to bear at times and I find I am needing to take a Tramadol some days.

 I haven't been spending much time on the computer for this reason as Tramadol makes me feel spaced out and I can't focus to write properly. Like everything to do with fibromyalgia, it's a tough task master and a tyrant, but it is what it is! 

Worth every cent!

 

I have enjoyed using my Roomba robotic vacuum so much that I have bought another robotic vacuum that also mops the floors.

Our home has lots of tiles on the floor and it takes a good deal of spoons to keep them clean. These two robotic vacuums saves me on energy and pain.

There's been little energy and a lot of pain these last few weeks. My blood pressure is still high even with me resting more. It's a bit of a puzzle really as emotionally I am good-or as good as someone with constant fibromyalgia pain can be. So I am not stressed.

I am enjoying our new home and it is finally decorated and things unpacked. I have also been decluttering and have given away quite a few things that I found were only taking up space without bringing me joy.

Anyway, I highly recommend all Sacrificial Home Keepers get a robotic vacuum- preferably one that mops as well as vacuums. They are coming down in price but I assure you, they are worth every cent!

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.