Showing posts with label Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. Show all posts

Where God wants me to be

 




Next month I will be 72. All things pertaining to ageing are at an all time peak. Everything that can ache, does.

Every day I need a nana nap to get through to dinner time and really there's nothing I can do to change that. I am forced to go with the flow.

I used to buy Lite N Easy food as part of my Aged Care package, but Chris and I have become sick of it. I have no choice but to cook.

As dinner times are when my spoons are usually spent, I sit down at the kitchen table and prepare whatever I can beforehand. Then it's just a matter of cooking some meat and doing some gravy.

Both ageing and fibromyalgia keep me living in pain, but I try to not complain about it too much.

I know at this season of my life that I can take that nana nap when I need to or leave the clothes to be folded another day. Likewise I can go to bed as early as I want... there are no schedules to keep.

Each day brings its challenges but even so, I am glad to be here...life is still sweet!

Even in this quiet season of my life it is very comforting to know that I am just where God wants me to be.  


© Glenys Robyn Hicks


And my people shall dwell in a peaceable habitation, and in sure dwellings, and in quiet resting places; Isaiah 32:18 

Still or not, you suffer




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.. still or not, you suffer..

 

© Glenys Robyn Hicks


So teach us to number our days, that we may apply our hearts unto wisdom.  Psalm 90:12

But by the grace of God go I



As you probably know, I suffer from a myriad of health issues from life threatening to annoying. Each day is a constant struggle to keep my home and look after Chris and myself and our little white cat, Xena.

Recently, I read an article about chronically ill bloggers who use the internet to feed their latent Munchausen's disease  The writer who obviously is not suffering an invisible chronic illness, concludes- falsely that we are feeding a desire for attention and sympathy.

This writer had no medical expertise and spoke with the confidence and freedom of a healthy person who knows nothing of the pain every day brings to us who aren't so blessed. It made me both angry and sad.

Anyone who manages to carry on a relatively "normal" life, sacrificing their comfort to serve and love those closest to them, know that the only thing we really desire is compassion. We rarely take delight in our symptoms, in fact the majority of us try very hard to appear as a healthy person in spite of being in pain and discomfort.

Goodness knows, we suffer so much with people judging us unkindly and this simply serves to push us further into depression and loneliness. Especially when our illness is invisible, like fibromyalgia.

Many of us chronically ill people are housebound for the most part, and therefore we feel a certain amount of loneliness and disjointment from society. We simply want to be respected and allowed to simply exist without the stigma of mental disease in the form of Munchausen's.

We bloggers of chronic illness do so because we know the feeling of disenfranchisement in a social sense. We are stripped of our right to live in peace and freedom from bullying ignorant people. 

Writing for those who suffer like we do helps us to reach out to people who would understand the psychological insulation and the sting of being misjudged and categorised as a malingering attention seeker. 

Whilst it is true that we have the LORD to love us unconditionally, it nevertheless hurts us that people are so cruel and instrumental in adding ridiculous labels to us that demoralise us even further.

Chronic illness and pain is a horrid  way to live and those who cast stones at us would do well to thank God that they aren't so afflicted. God has not chosen them to walk the lonely path of chronic illness and they also would do well to remember "but by the grace of God, go I" 

© Glenys Robyn Hicks



Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers. 3 John 1:2

Thank goodness for my snazzy wheelchair!


So today I handed in my driving licence. Sitting here tonight, the enormity of my decision and resultant actions gave me pause to think.

The fact that I have torn ligaments in both knees meant that I no longer have enough strength to apply the brakes or accelerator. I have become a danger to myself and others.

With constant brain fog from fibromyalgia as well, I felt it was time to stop driving.

Vic Roads sent me paperwork to have my doctor and optometrist clear me to keep driving as I suffer from type 2 diabetes and that can effect the eyes.

I was going to get this done but then I realised that my eyes are not the only risk when I drive- my knees not working is as great a risk.

So instead of going to get my eyes checked, I decided to just stop driving. As I said, I handed my licence into Vic Roads.

And now, I am sitting wondering if I have done the right thing- yet I know I really had no choice.

There is always the option of walking around if I have no one to drive me somewhere... it is known as shanks as pony- using one's legs as the mode of transport.

Herein lies the problem with that- there is no shanks as pony, because I can't walk with torn ligaments that can't be fixed.

I hadn't thought much about it until now, but here it is- no driver, no car, no money- and sadly now, no shanks as pony!

Thank goodness for my snazzy wheelchair! 


© Glenys Robyn Hicks


To everything there is a season, A time for every purpose under heaven: Ecclesiastes 3:1


Crying happy tears!

 



So the last few weeks have been difficult to say the least. We have helped my sister close up her house, moved her in here and found accommodation for my son. 

On top of that, RSV has gone through our home and was pretty horrid. My sister says it was worse than Covid. 

Add a severe fibromyalgia flare to the mix, and you have a very disheartening turn of events.

I have prayed a lot during the last few weeks but haven't been diligent about reading my bible. To be honest, sometimes it was hard just to keep awake.

Today I finally got back into the Word and was immediately drawn to Proverbs 20:20- Whoever curses his father or his mother, His lamp will be put out in deep darkness.

I was immediately convicted of doing this- not actual cursing but speaking badly of particularly my mother, due to a very traumatic childhood.

I repented quickly but even so, I meditated on this during the night, talking to the LORD about it.

During this talk, I asked Him why He has in fact blessed me all these years, and immediately I felt Him tell me that He knew and saw all the past hurt and allowed me to talk it out and slowly release all the pain.

I further felt that now is the day to let it go- really go, and move on. I am amazed at the patience and tenderness that God has shown me and I am so very grateful for His love and forgiveness and mercy.

You may recall my love for kingfishers and how God used to make sure I saw them whenever they came for a feed.  I call them  "love glances"

Fast track to an hour ago as I was preparing lunch. I happened to look out of the glass door from where we feed the birds in the garden.  There was a black and white kingfisher! A love glance! 

My heart burst with love for God and happiness that He still loved me in spite of my many failings! It was just what I needed to lift my spirits... and today like many times before, I cried. 

Tears of gratitude and joy and a deeper joy in my spirit replaced the tears of pain and frustration of the last few weeks.

Finding Jesus is not finding religion- it is having a relationship with God and I am very pleased to report that God met His daughter's emotional needs mightily, for  He glanced at me in a personal way that  made me cry the happiest of tears! 


© Glenys Robyn Hicks



He said, “I am the Lord, the Lord. I am the God who is tender and kind. I am gracious. I am slow to get angry. I am faithful and full of love. Exodus 34:6

It's not about how fast we spin our wheel



We have RSV in our house and I am wiped out! Whether you have the flu 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.


 © Glenys Robyn Hicks

 

Because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name. He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him. With long life will I satisfy him, and shew him my salvation. -Psalm 91:14-16

Taking it up again!



You may remember that I had to give up knitting and crocheting as it hurt my hands too much. It was so disappointing!  

I was visiting my twin sister one day and I found her crocheting a beautiful baby shawl. Now her hands are sore with her lupus and arthritis, and when I asked her how she managed and  told her I could not longer knit or crochet, she encouraged me to take it up again. 

She assured me that her hands had improved since she took up her handcrafts again, and I resolved to give it a try. My hands improved and I had better flexibility in my hands and wrists. I was rapt! I needed to do something creative and those last few months

With fibromyalgia it is important to find something to take my mind off pain, and I find knitting or crocheting does that to some degree. I believe it is healthy and very satisfying to be creative and I have knitted, crocheted or sewn many gifts for family and friends over a lifetime.

I also enjoy blogging and so I thought to create a new one, highlighting a lot of those creations, mainly to remind myself of happy hours making and giving each one.

Currently I am working on making baby shawls and jackets for my grandchildren to use for their own children when the time is right... an heirloom gift or legacy if you will.

With being 71 years of age, I obviously don't know how long I will be able to continue doing this, so I am working on them now, either giving them directly to those old enough to keep them themselves, or to their mothers to keep until the time is right.



Keep clicking and stitching,

Glenys                    

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! 



© Glenys Robyn Hicks



Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.’ Isaiah 41:10

I just have to pursue it.





 So with a horrid year last year, I was quite happy to see the end of it. I messaged my friends and family and wished them a happy new year, then turned my phone off and went to bed.

It was only 11 o'clock, but I was exhausted and had no spoons left. The weather was really warm and I decided to forgo my electric blanket. With the help of a Tramadol, I managed to quell my fibro and back pain and soon fell asleep.

I woke up at 2am and realised that it was January 1st. Not that it makes much difference what year or day it is- for Chris and I one day is much the same as another. We stay home mostly.

This year, I am training myself to live in the moment. That's all we are promised anyway. I have worried about what lies ahead this new year, but I am going to stop thinking too far ahead.

I plan to read more of the Bible and saturate myself in uplifting reading and videos. I am going to try to live with hope and not dwell on negatives.

The eternal optimist, I am going to believe that I am going to have less fibro pain and get more done. I mean, if one thinks only of horrible things it will ensure that I just exist and don't live.

I don't want to endure next year, but enjoy it. It's a big ask, but it is possible. I tell myself it's possible to live an abundantly happy life in spite of pain. I just have to pursue it. 


© Glenys Robyn Hicks


So teach [us] to number our days, that we may apply [our] hearts unto wisdom.  Psalm 90:12

Unpretentious and simple

  


As you know, I have been having problems with my heart and fibromyalgia. My blood pressure is barely controlled and I am constantly tired.

We have decided to cancel Christmas this year. I haven't even put up a wreath on the front door, let alone, a Christmas tree.

We are staying home and nobody is coming. Contrary to how I would feel in years past, this year's plan gives me peace.

We plan to play games online with my sister and son. There's nothing like a game of online Scrabble with familiar people who are well matched in scores.

None of us is able to attend church these days but that doesn't stop us from worshiping God and remembering Jesus on the day we choose to celebrate as His birthday.

Next week I will be ordering my Christmas food and I will be buying a ham and organic salad vegetables for Chris's and my lunch. I will also be buying some grape juice and matzo crackers, as we plan to take Communion online with my sister and son like we did last Easter.

It is not an ideal Christmas, but with all of us feeling unwell, it is making the best of a bad situation.

We all feel that as long as we remember that God sent His Son Jesus to bear the sins of the world and be our Saviour, then that is what Christmas really is.

Besides, the first Christmas was extremely unpretentious and simple. It's OK if ours is too...


 © Glenys Robyn Hicks



" So teach [us] to number our days, that we may apply [our] hearts unto wisdom" Psalm 90:12

Ordinary and good!



It's Wednesday morning here. I have just finished putting the groceries I got online away. It's so convenient for Chris and I seeing as we both are unwell

I have done a couple of loads of washing and am thinking about doing some lunch. Toasted cheese and tomato sangers sounds good and easy.  

My kitchen needs to be cleaned but I am out of spoons as I didn't sleep well last night. The weather is changing as it's autumn here and we can experience all seasons in one day. It plays havoc with my fibromyalgia. It's making me feel miserable.

I am thinking of taking a nana nap before I do the kitchen. But before that I will take some Panadol Osteo   to help relieve my fibro pain. Pacing and resting are not an option with fibromyalgia: it's a necessity. 

After I clean the kitchen I will cook chow mein and rice for dinner and if I have enough spoons I will fold the day's clean clothes and put them away.

It's an ordinary day here and I am glad. When you think of what's happening in the world, I can truly gratefully say that God has blessed me with a day that's ordinary and good! 




We have to talk




So I am aging, overweight, have had over 50 kidney stones and 5 surgeries to remove them when they were impacted, and have given birth to 6 children.

Because of this, I used to find that a sneeze could have disastrous results, causing me embarrassment and discomfort as I wet myself. So much so, that I went to a physiotherapist who taught me how to exercise my pelvic floor using Kegel exercises.   They helped me quite a lot.

Nothing else has changed - one cannot change the past- but the only difference was my consistent Kegel exercising. This is for men as well as women, I was told. Anyway, I recommend them to everyone who has stress incontinence.

However, as much as Kegels have helped me, I have noticed that when I am in a flare of fibromyalgia, often I rediscover the joys of stress incontinence. 

It seems to me that fibromyalgia weakens my muscles in my pelvic floor and causes lack of control of the bladder. Just another problem fibro brings that many don't recognise or talk about.

I have purchased some undergarments that absorb urine yet look like normal underwear  I wear them when I am in a fibromyalgia flare, and they do a great job. (There are similar ones for men) It seems lately as I am in almost a constant state of flaring, that I am wearing them more often. 

It's just another pain for us Fibromites to endure, and I hope by sharing about this, it helps you if you have the same problem. It's nothing to be ashamed of and it's something we need to talk about.


Micah says it all!



Recently during one of my quiet times, I read one of my favourite verses from Micah 6:8 "He has shown you, O man, what is good; and what does the LORD require of you but to do justly, to love mercy, and to walk humbly with your God?"

Being a  Christian isn't  really that difficult. Once one has  surrendered his or her life to Christ, the Holy Spirit guides us into that which pleases God. 

Our walk with Him is continuous and should lead us to becoming better people than we were yesterday, emulating the Master, Jesus Christ.

As a sufferer of many ailments which cause chronic pain and fatigue, fibromyalgia being the worst culprit, I used to worry about not being able to serve God as well as I did in my younger Christian walk before illnessdep. 

Depression would hang around my shoulders like a cloak because I felt unable to do much for Jesus, in fact unable to do much at all for even my family.

Then I had an epiphany! I realised that God can be served mostly by having a loving heart. Besides, His love for us is not dependant on what we do, but on what He has done for us! 

God only requires that I love Him with my whole heart, mind and soul, that I love justice and mercy and that I walk humbly with Him. It's nothing to do with limitations brought on by illness or disability or our lack of energy or spoons to do things. Grace is wonderful and my favourite verse in Micah says it all!


© Glenys Robyn Hicks


"He has shown you, O man, what is good; and what does the LORD require of you but to do justly, to love mercy, and to walk humbly with your God?" Micah 6:8

I'm no longer a bunny!


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

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

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

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

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

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

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

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


© Glenys Robyn Hicks



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

Like a vapour!



It's been a rough morning. Firstly I woke up feeling the worst fibromyalgia pain I have ever felt. Not a cryer, I cried this morning. 

Then I took my morning pills- 11 of them. And they got stuck and melted... so I grabbed my cup of tea to push them down and it was boiling and I choked. 

Chris had to pump my back to try and dislodge them. I couldn't breathe and I thought I was going to Jesus right then and there.  

As I type, my throat and lungs are burning and closing over... I have lost my voice.

Please pray urgently that I don't get aspiration pneumonia again. I have had it 3 times and am prone to it... I only have one functioning lung.. 

Only good thing about today is that I can breathe and that the Rapture is so close. Maranatha. I am ready, Father! Life is so short, and it can end so suddenly... like a vapour

If you don't know Jesus as saviour why not ask Him into your life today? There's not much time left and tomorrow isn't promised... Click here for more information...  


© Glenys Robyn Hicks


Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away. -James 4:14

To eat the meat!



With Good Friday being on us, often the question of whether or not to serve red meat comes up. Basically the tradition is something the Catholic church adopted and the protestant churches followed... 

Because I have found nothing in scripture forbidding us to eat red meat on Good Friday- or even on Fridays for Christians, I have no problem whatsoever eating it. In fact, when I was worshiping at a Pentecostal church, they held a BBQ after the Good Friday service. 

The  answer  for our house is yes we eat it on Good Friday-  however,  if someone is with us who has a problem with that, we abstain for their sake. Scriptures don't tell us not to eat red meat on Good Friday, but  they  do tell  us  to  respect  the conscience and belief  of  those  who don't wish to.    believe like everything in the Christian life, it comes down to loving your neighbour and fellow man. 

This year because my son is living with us and because he upholds the traditions of his childhood when his  (non-practicing)  Catholic Italian  father  didn't eat it,  we will be having fish for lunch.  

If  my  fibromyalgia  flare goes,  our family  evening  BBQ for  Easter is  going to be at  my daughters'  home and eating fish,   because her husband upholds the traditions of the Catholic church. They do not eat red meats on Good Friday. 

I believe we are to respect other peoples' conscience in our decision whether we serve red meats to them. It is the loving thing to do.. Have a blessed Easter!  


 


If any of them that believe not bid you [to a feast], and ye be disposed to go; whatsoever is set before you, eat, asking no question for conscience sake. But if any man say unto you, This is offered in sacrifice unto idols, eat not for his sake that shewed it, and for conscience sake: for the earth [is] the Lord's, and the fulness thereof: Conscience, I say, not thine own, but of the other: for why is my liberty judged of another [man's] conscience? For if I by grace be a partaker, why am I evil spoken of for that for which I give thanks? Whether therefore ye eat, or drink, or whatsoever ye do, do all to the glory of God.  1 Corinthians 10: 27-31

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


Dead tired


A woman who suffers from a chronic illness or disability often finds herself at the end of "normals'" ideas of being tired. We are often looked at with contempt for being so tired that we can't perform our daily duties properly. Or that we have to go to bed early, rise late, or cancel social engagements at the last minute. We are not lazy. 

Before Corona, we were regarded with suspicion when we couldn't make it to church regularly and people harshly judged our spiritual health, deeming us backslidden.  Emotional and spiritual hurt exacerbates our ill state. We feel worse and they lack compassion.

Often we have to cancel doctors' appointments because we are too sick to get there. We find we can't drive and even if we could, we haven't got the strength to even get washed and dressed. It is not unheard of that some of us have crumpled in the shower, unable to get out and totally winded...

Our "tired" goes far beyond a sleepiness or drowsy feeling. We are so fatigued that breathing is too much effort and not for the first time we are grateful it's automatic.

Furthermore, our "tired" is not helped by a nanna nap or even 9 hours of sleep.  We fight our illness and pain even in our dreams and wake up unrefreshed and have to face another day when we haven't recuperated from the day before. We simply have run out of spoons.

"Tired" is overused and doesn't come close to the bone sucking quagmire of desperate fatigue we chronically ill people find ourselves sinking into constantly.  To have "normals" flippantly say, "Me too!" when we tell them we are tired invalidates us and makes us long for their brand of tiredness that can be restored through a good sleep.

We cannot even enjoy a shower or bath to help us sleep as the effort it takes to do this not only drains us of whatever energy we can find, but does not always bring a restorative sleep. Just muscle pain.

Such is my own pain on going to bed that I find I cannot place my arms anywhere comfortable. My fibromyalgia and polymyalgia rheumatica make it impossible to raise my arms upwards and extending them hurts my muscles and tendons. So I go to sleep with my arms folded on my chest.

I indeed look like a cadaver which has been laid out and testifies somewhat to the feeling of being dead in my tracks.  Because that's the type of exhaustion we face every day: we truly feel dead tired.


© Glenys Robyn Hicks


Cast me not off in the time of old age; forsake me not when my strength faileth. Psalm 71:9

Making the most of my spoons



So for the last few days I have been enjoying a respite from fibromyalgia pain. The weather has been lovely and sunny and the warmth has permeated my being and soothed a lot of muscle pain.

I have been decluttering our home and making extra meals to freeze for later on. It has been a novelty and a joy to have spoons to do it.

Aware that it can bring on a flare if I do too much, I have been pacing myself. I do 15 minutes sessions of decluttering with a rest in between. With cooking, I do about half an hour of food prep then take a rest as well.

I am enjoying my new dishwasher too. It certainly makes keeping up with the dishes and keeping my kitchen tidier easier. And that I find, encourages me to cook.

I really don't know how long this respite will last, but I'm grateful each day that I have absence from pain and fatigue.

Until you have a respite, you don't realise how challenging your life is. So for the moment, however brief it may be, I will be making the most of my spoons.
 



The Queen of List Making



So I did it again! Instead of cleaning up after dinner, I went to bed with dishes in the sink. I hate when I do that!

I mean, with fibromyalgia robbing me of a good restful sleep, the mornings are hard enough to face. Having a dirty kitchen to wake up to is the pits!

Most would think that it's just laziness, but by the time I have cooked dinner my spoons are almost gone. Yes gone! I am so done in by the end of the day that even lifting my arms up to put my nightie over them creates pain.

Oh, yes, I make lists and read motivational blogs and You tubes, but to no avail. I am the Queen of List Making. Yet my limited spoons dictate that I do very little and I am left with ashes in my mouth.

I know I said before that I have been keeping busy and that's true, but I now have a rebound fibro flare and coupled with our autumn cold snap with rain, I am in a lot of pain.

You would think that I would have worked out this fibromyalgia lurk after twenty years. And for the most part although I hate it, I have learned to exist with fibro without feeling false guilt that leads to depression.

Most days I accept my disability, but deep inside is a perfectionist screaming to get out! On days like this, I try to nest and I overextend my limits. Hello, Fibro Flare!

I am grateful to my husband Chris. He is an mild mannered man who is happy with how I do manage to keep our nest. He, and most people who come to visit- well in better days obviously- are happy with the state of our home.

It must be that I am my own worst enemy: trying to do the work of a much younger healthier woman: everything in its place and a place for everything. But always straining, never achieving thanks to Fibromyalgia.  I need to accept what is and hang up my crown as the Queen of List Making.