We have to live through the bad times

Every day is precious no matter how much you ache or hurt. Life has to be lived rather than endured.

Realising how short life really is should encourage us to live it with courage, taking hard times as

a challenge. And living with fibromyalgia is a big challenge.

Not every day will be sunshine and roses, but those days will help us appreciate the days that are.

Remember too, we have to live through the bad times to get to the good.

 

 

I don't think I would cope!

 

Well, my fibromyalgia flare has abated, and I have been doing a lot of knitting as watching TV bores me to tears.

We are in Autumn or Fall here in Australia and the mornings and evenings are cold, so there's nothing nicer than doing some handcrafts in the warmth each evening and throughout the day.

I have been a bit depressed lately and I think it's because I have been watching too much news on world events. So I decided to turn it off and bring my attention to something positive.

I often listen to the Bible on YouTube read by David Suchet. It tends to put my mind at rest and gives me pleasure.

Most mornings I do breakfast and medications and go on the computer to check emails, answer any comments in my blogs and check out groceries specials and organise our medications and get the scripts that are due, refilled.  Then I tidy my home.

I have a lot of joy in watching the birds that come into our back garden and one of my morning chores is to feed them after I have fed Xena our little white cat... separately of course lol

As I am often low on spoons, I need to pace myself in the afternoon and often take a nana nap in order to be able to cook dinner.

We don't leave the house much at all, and to be honest I prefer it that way. But with my motorised scooter coming soon, I may find I quite like shopping again....

Life is pretty simple- almost boring, but with all that's happening in parts of the world, I am glad for the boring life. I don't think I would cope very well running for my life away from bombs!

Don't let them dictate

I have been very ill off-and-on for several weeks now. But I needed to drag myself out of bed and "Make an Easter for the Family" as Connie Hultquist would say.   I will be okay. My husband (who is disabled) and I learn to live in pain and suffering.  He will say that he is going to suffer whether he is doing something in life, or sitting still and hurting.  He chooses to do things and live, rather than do nothing and suffer. He will suffer no matter what. But we put on a happy face and enjoy the family and our home and all the wonderful blessings we have.  Mrs White of Legacy of Home

 

As a chronically ill woman, I have seen two lots of sufferers- those who feel like Mrs White and I and those who take to their beds and surrender to it.

Just because the former types of ill people push on as much as humanly possible does not mean that their illness is all in their head and therefore subject to discipline of oneself. 

It means that they realise that they may as well try to live as normal a life as possible instead of taking to their bed like the latter half and doing nothing... 

We all have days where illness or disability makes it impossible to do anything,  ensuring we have to rest, but those who never try to live won't even try to have a life even on better days.

Last week I had a fibromyalgia flare and it was truly torture to try to do those jobs I need to do.. I had no other choice than to rest. But today is the first day I felt a bit better, and so resumed my "normal" routine and feel better emotionally for it.

Others would prolong the flare and continue to stay in bed as they often fear bringing on another flare. Instead, they often succumb to depression because they have mentally  put themselves in the invalid role and therefore often endure the loneliness and joylessness of the invalid.

Over the past 24 years of fibromyalgia and other illnesses, I have decided to push myself a little in order to enjoy more of my life. But there's always a balance- if I feel particularly down, I will take a nana nap or actually go to bed.

The trick is learning to co exist with these illnesses and try not to allow those dictators called "Spoons" to literally dictate how we will live each day and how much enjoyment we will derive from each of those days.

As I have been up for quite a few hours already and done some housework, my muscles are cramping and I need to rest. But at least I have some job satisfaction and can cross some tasks off my daily to do list...

Until next time, may you find some spoons to energise you and some motivation so as to enjoy the most of your life that you can today...

Don't let the spoons dictate your life every moment..

 

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 

It's not about how fast we spin our wheel

Whether you have the flu or a cold or suffer like I do from fibromyalgia, you will have days where your body forces you to rest simply because you can't do anything else.

But that doesn't mean that resting will make it better. Nor does it guarantee that you will gather more spoons to use when you rise up from your sickbed.

When you are chronically ill, you don't get better and rest definitely doesn't leave you feeling refreshed and full of energy.

The most rest can do for us is give us a temporary respite from forcing ourselves way beyond  our comfort zone to serve our family.

Needing to rest can make those who don't understand chronic illness to make us become the victim of nasty retorts stating that we are lazy and putting it on in order to take to our bed. 

Being that fibromyalgia is one of many invisible illnesses, we are often maligned as malingers and the angst that this creates can cause us to become depressed as well as angry.

We didn't ask to be sick and most of us in fact push ourselves way beyond our comfort zone to prove to ourselves and others that we are not lazy.

I think as fibromyalgia is often a prolonged illness that we would do well to take thoughts of others directed at us to be taken into the captivity of Christ Who doesn't condemn us but Who loves us at all times. 

He understands and doesn't condemn us. We have to take His Word that He loves us as we are.

We need to learn to switch off from those who condemn and criticise us for taking frequent breaks and nana naps. We know we are doing the best we can and our worth is not about how fast we spin our wheel.

 

Play it in your own time!

 

As   we shared before, I  am supposed to  be getting help in cleaning our home. But it has turned into a mess  and I  have fallen in  the  cracks.  There was  a woman  who  came for three weeks, but  she was woefully indolent and a liar.

We are paying a co-payment to have her clean for two hours a week and sadly she wasn't worth the money.

For the first half hour she chatted and I had to bring her gently back to why she was here. Then she bustled around and "cleaned" stuff. 

When I say "cleaned" I am being generous. We could see no difference in our home cleanliness even after she was gone.

Chris was ill and in our bed, so I said to her that she needn't worry about changing it this visit. I asked her to pay particular care in the bathroom as it was looking like it needed a good clean. Particularly the bath. And I wanted the vinyl floors washed.

With half an hour to go, she came out and sat on the living room carpet in front of our beautiful backyard and watched the birds and played Candy Crush on her phone.

Knowing that she hadn't done much I asked her if she had cleaned the bathroom and toilet. She nearly shook her head off in affirmation. I had my doubts though.

I asked her if she had mopped the floors and she said "You don't really want them washed today, do you? They still look clean!" 

When her knock off time came, I begrudgingly signed the paperwork, confirming she had been.

Suspicious, I went into the bathroom. There was my hair still in the bath, the cap of the shampoo on the floor of the shower and Chris's whiskers in the hand basin. There was a cotton bud on the floor.

I took a quick look at the toilet too. How can I put this delicately? I can't. There was grunge still at the back of it. So without changing our bed or mopping the floors or doing the bathroom and toilet, she spent a total of one hour vacuuming our very small home. I was angry. I hate being lied to.

That afternoon, I rang my aged home care co-ordinator and told her what had happened. If they couldn't replace her, I would prefer none. I didn't want her back in my house.

So five weeks passed and I heard nothing. Turns out the home care case manager for me has been off for the last three weeks and I have fallen between the cracks.

So when I get someone to help me is anyone's guess. And for me, it can't come sooner. Not that our home looks like a burgler has ransacked it. I keep it tidy and it is always decluttered.

But my home is dirty. As any homemaker will tell you- it effects how you feel. And physically with the fibromyalgia flare brought on by driving a lot last week, it sucks even more.

There's not much I can do but wait again and hope they send me someone who has a decent work ethic.

Though from what I have heard, none of them does a really good job.

But as Sacrificial HomeKeepers know, we have to ditch perfectionism and accept that anything is better than nothing. Except the home carer who used our money to play Candy Crush in my living room. 

She should play it in  her own time!

He who is slothful in his work is a brother to him who is a great destroyer. Proverbs 31:9

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! 

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! 

Not as I appear

We chronically ill women try so hard to do "normal" things. Like look well. Be cheerful. Be patient. Kind. Hospitable.

Our family and marriage are our first priority after God. We try so hard to spin our wheel not fast- but at a "normal" pace. By "normal", we compare ourselves to those who do not suffer from chronic illness and pain. Or are disabled.

We are very careful to keep serving our family but sometimes with the illness that afflicts us: we fail. This often gets to us and causes us to sink into depression.

Being unable to process that we simply can't act as "normals", we often berate ourselves and sink into the Pit of Despair. 

We are often judged by "normal" standards, as we simply cannot attend certain social functions like before. If we do, the pain and effort can make us tense and we can make us appear moody unsociable grumps aka the death head at the feast. 

If only "normals" would realise that we are pushing ourselves every day to live a life that not even closely is "normal" like in the days before our health failed. We get so adept at doing this, that we have become quite good at wearing masks to cover the Mask Of Pain. Hence the appearance of being in a mood. 

My fibromyalgia and other health issues have now made it impossible for me to disguise, and I have learned to acknowledge this to people and tell them in advance that my attendance or action or whatever is totally subject to how I am on any given day.

Basically, I have had to pander to injured knees, angina, spinal problems, fibromyalgia, polymyalgia rheumatica, and submit to tyrannical spoons by being totally flexible about my appointments and so on.

People may still misjudge me but that is not my problem. I just pray that the LORD will allow them to see that I am not lazy or unsociable, but am just a chronically ill woman who finds just breathing some days enough effort.

The LORD knows I am not well, but people take a lot more convincing. I am not as I appear: I am not "normal".

 © Glenys Robyn Hicks    

Put on therefore, as the elect of God, holy and beloved, bowels of mercies, kindness, humbleness of mind, meekness, longsuffering;  Colossians 3:12

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.

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.

It starts with you

  

Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.

Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.

Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.

On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...

It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.

When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.

So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.

I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.

Today's the day of salvation

 

I think most of us believers feel that God is slow in coming back for us, and we are frustrated and depressed as the world is a sad place.

I have studied eschatology and I believe that the LORD is coming for His Bride- us soon! very soon.

Let that blessed hope buoy you up. It does me. He is at the gates... Just keep trusting in Him for He loves us... look up my friend. Our redemption is nigh.

God's wrath is for the unbelievers and Israel to recognise the Saviour they rejected. We are not going through the Tribulation.

We leave soon. Look up... I will save you a seat at the Marriage Supper.... Maranatha! Choose joy. we are blessed!

If you don't know Jesus as LORD, you can be Rapture ready by being saved. You don't want to be left behind. Today's the day of salvation... don't leave it too long.

© Glenys Robyn Hicks

“Because you have kept My command to persevere, I also will keep you from the hour of trial which shall come upon the whole world, to test those who dwell on the earth. Revelation 3:10

You can rely on His Word

Scripture tells us that we will not know the day or hour that Jesus comes to take His Bride- the Church home with Him. We who are looking for His glorious appearing and being with Christ for eternity are longing for the Day. And so we should be.

“However, no one knows the day or hour when these things will happen, not even the angels in heaven or the Son himself. Only the Father knows"  Matthew 24:36

Many of us are experiencing our own tribulations as the world is cast into the shadow of the great Tribulation, and we are tired of living in this sin-filled, ungodly world. We need to keep not only our eyes looking up, but our hearts. 

As in the days of Noah, so shall it be in the final days before the Rapture also known in the Bible as the Harpazo and  Rapturo. (Yes it is mentioned in the scriptures). We need to keep the faith, keep fighting the good fight and keep our spirits and heart in longing for our Beloved to come for us. And He is coming! 

What can we be doing as we wait for Jesus to take us Home?

• I believe we should be in prayer for those people suffering under authorities such as the Taliban and for all those Christians who are in danger. 
• We need to intercede for the Ukrainians who are being invaded as we speak.

• We should be praying for those who are still unsaved. 

• Keeping the faith can be difficult for some, especially as the world gets darker. We need to pray for ourselves too.

How can we overcome the anxiety and depression these end days bring?

• We should bring our thoughts and minds under the control of the Holy Spirit by focussing on good things that are still here

• We must remember that Christ is in control, no matter how bad a situation becomes.

• We must bring everything we see, hear and read in to the light of the Word and we must remember that all these things, though disturbing, are temporary.

• We must maintain an attitude of gratitude for all things in our life and dwell on God's goodness.

• We simply must be a person of worship and praise.

• We must be in the Word.
• We must remember that Jesus has promised to take us Home before the Great Tribulation. 

Because you have kept My command to persevere, I also will keep you from the hour of trial which shall come upon the whole world, to test those who dwell on the earth- Revelation 3:10

The end is in sight and we are tired. We long for Jesus to take us to be with Him. We are continuing to fight the good fight. We are running the race and our Saviour cheers us on. 

We are being His faithful servants even in the end days.. whilst watching and waiting. Even so, come Lord Jesus! Maranatha! 

Those who don't know Jesus yet....There's not much time left, my friends. Get on the Ark and get saved now.

He is coming- and soon. Accept Christ now!  God is fulfilling all things and it must come to pass. You can rely on His Word.

 

 

Having patience with yourself.

  

Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.

Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.

Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.

On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...

It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.

When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.

So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.

I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.

Pain is a disability

Anyone who suffers from chronic pain knows that it precludes us from a lot of enjoyment of life. Pain makes the vicissitudes of life that much harder to bear. 

Everything is exaggerated both physically and mentally, and the only thing I can do is accept that this is not my usual self, for pain changes people.

Pain disables us in many ways. from physical activity. from family life. from sex. from sleep. from patience. from social life. from functioning normally. from life generally.

The effects of pain cause us to withdraw from people and become reclusive. It makes us feel isolated and unable to really feel understood or validated. We learn to be distrustful of others.

Because chronic pain, in my case fibromyalgia, causes us so much mental as well as physical angst, we decide to retreat to our home often preferring it even if we had enough spoons to leave.

Seeing as pain is such a disabling affliction, it makes no sense to me that we are often regarded by doctors with suspicion when we request heavy duty pain relief such as opiates.

Most of us cannot get enough medication to adequately help us with our pain. We often then succumb to depression and live as recluses  due to agoraphobia. 

We who suffer from chronic pain know that it is a disability. Invisible and destructive. We live in the knowledge that pain is disabling. 

We just wish doctors were as aware of the ongoing relentless disability called Pain.

You just have to flex with fibro

 All of us who suffer with fibromyalgia know that it's a very unpredictable illness. We just can't plan with it as we don't know how we will feel until we wake up- and even then it's unpredictable.

We can start our day with extreme stiffness and pain, yet can come better by mid morning some days. It makes planning our day difficult to say the least.

I can't count the number of times I have had to apologise to someone for not being able to socialise or go shopping. I felt well at the time of arranging or accepting the invite, but fibro had other plans and held my body hostage.

Countless times I have planned to declutter my house or some other chore, and I have even gotten started only to find that my body was yelling at me, "Seriously??" and I had to stop. 

It is very challenging and even depressing. But it is what it is. Fibromyalgia is a pain in so many ways!

Lately, I have learned to say to people that I would love to come/do something but because of my fibromyalgia, I won't really know until the day how I will feel. So I will say a tentative yes and hope to be there/see you! 

I have had to learn to not be dogmatic about when I will do a certain chore. For example, all my life as a homemaker, I have changed my sheets every Monday. But with the coming of chronic illness, I might not feel well enough to do it that day. I have just had to accept it.

Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.

I have learned the hard way too that it's no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It's not the end of the world, and you just have to flex with fibro...

Chipping away at the stone

So my fibromyalgia is back with a passion, making every muscle ache. I tried to take a bath a couple of days ago and I had great difficulty getting out. I had to use a pillow under my knee and I had no other option than to lean on it to get up. It was so painful and the consequences are enormous.

I know I shouldn't have tried with both knees with torn menisci and other ligament damage.  I was in so much pain that I longed for a bath to hopefully relax my muscles. It didn't. Nor did it help my sore neck with another episode of polymyalgia rheumatica.

This constant pain is wearing me down. My doctor is too afraid to give me pain relief and I am considering changing doctors. This creates anxiety in me. And to top it all off, I have been cranky and not really a nice person to be near at the moment.

With Chris ill himself, I seem to be carrying everything myself with no help in sight. Take this morning for example. I put on a load of washing, cleaned Xena's litter tray and unloaded and loaded the dishwasher.

Testing our blood sugar level before breakfast,  I asked Chris what he wanted for breakfast. He told me what he wanted, just sitting there waiting for me to get it for him. I am sorry to report that I arced up and told him to get it himself.

I added some other truths about him acting like he's the only one with pain and that I am tired of being his servant when all he does is watch TV and sleep all day. You gotta understand, that usually this isn't an issue, but the pain has truly worn me down.

Chris asked me what I had done so far this morning. I told him and he replied that it isn't necessary to push myself like I am doing. Push myself? Doing minimum household chores?

I told him I was just trying to live a normal life and he replied, "But you aren't normal! You have got to realise that and accept it!" But in fact, what I do is pared down to the bone housekeeping compared to what it was even 10 years ago. How much less can I do and still manage to live a relatively clean and organised life? Single handedly.

Over the 23 years of having fibromyalgia I have had a determination like stone. I would not let fibromyalgia or indeed any of my other painful conditions control my life. And for the most part it hasn't. Until today. It's chipping away at the stone.