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 is what it is! indeed!

 

In my efforts to still be mistress of my home in spite of severe health issues, I have tried to pare down my necessary daily tasks.

I can forgo doing the washing for a day or two. I can not make my bed or do much cleaning. But every single day I find I must cook, which is a necessity that brings the second necessity of the day: doing the dishes.

Oh I have left them before during a fibromyalgia flare. But I have learned that they seem to multiply like rabbits- my kitchen sink and bench are testimony to this!

I have left the dishes until the morning or even until the evening, but the mess on the plates and cutlery makes the job not only labourious, but "yucky". So I have learned to keep abreast of them.

Now I know some people use paper plates to avoid doing the dishes, but I am old school. Besides, everything tastes better on a china plate or in a glass or cup. I detest polystyrene cups or picnic cups.

Occasionally during a bout of angina or fibromyalgia or even a day of back pain, I am happy to order take away meals... but it is such a nasty blow to the budget that this is rather rare.

So then I am now convinced that I must acquiesce to doing the dishes daily as we absolutely must eat- there's nothing else I can do about it except cook.

Finding two daily essential jobs wasn't easy because there are so many more things one could count as essential. 

More over, one thing chronic illness has taught me is that spoons dictate not only one's lifestyle but standards.

One can either accept less high standards or die trying to sustain them. And given the effort in just breathing and being some days, the standards become more achievable.

I have had to accept what the young ones say, "It is what it is!"  Indeed! It is! 

Sex isn't everything!

This picture reminds me of Chris and I in the kitchen...  I often can be washing the dishes and he will come behind me for a cuddle.. I still blush  and giggle like  a school girl!  I usually go weak at the knees when he kisses the back of my neck, and I turn around and kiss him passionately.  Finally, we break away, breathless with romance and laughter!  Most times, he then pitches in and helps me finish washing up.

This little dalliance of ours to us is quite romantic and that coupled with the fact that Chris helps me with the dishes, makes me feel nurtured and happy- it doesn't take a lot for me! Which is good, because money is short for a lot of flowers and chocolates.

We do go out together for meals whenever we can salt away a little money.  Nothing too expensive, but we bring our own ambiance!  Just looking into each others' eyes and holding hands over the table reminds us of our early days together and keeps us focused on each other.  Truly, we do adore each other.

Because money is in short supply, and because we constantly laugh together and cuddle often, we feel that special occasions such as Christmas, birthdays and Valentines' Day aren't necessary to show affection and love. We in fact, do not buy gifts for these for each other. And it is perfectly fine with us. We do, however look at our wedding photos and reminisce a lot on our anniversary or any other date significant to us...

I think it may be the fact that we are an older married couple that makes it easier to see romance in ways that younger couples don't.  With age and fibromyalgia and heart and back problems and Chris with his diabetes, sex is either umcomfortable or impossible. So both Chris and I look forward to a bubble bath at home with a good back wash and nail trims or a foot or back massage.  We do that for each other on a regular basis. To us, nurture is romance!

Chris loves me bringing his breakfast into him in the morning. This to him is romantic and although his not buying me presents and sending me cards may seem that he is an unromantic man, nothing could be further from the truth.  He sings to me! We have some special songs that he says were written just for us, and he will play them on the computer, and take me in his arms and croon to me as we dance slowly round the living room.

Because I am often in hospital, Chris shows his care by staying with me most of the day until visiting hours are over, just stroking my hair and holding my hand. Or he will come with our laptop and headphones for me. My heart melts with love for him.  We can't stand to be away from each other.

Illness, medications, no spoons and age have curtailed our times of intimacy, but we manage to show love to each other in ways that are imaginative, erotic and very caring.  There is absolutely no thoughts of unmet needs- love can be expressed in ways other than full sexual intercourse, and we delight in each other regardless! If sex happens, it's a bonus!

So we don't care about no presents or cards for Christmas, or birthdays or Valentines' Day-  with the romantic sparks that still fly between us, and our little dalliances, every day is Valentines' Day. 

I thank God for Chris as I am one very blessed wife, and I tell him often.... he finds that very romantic too! We are proof that you can live without sex! Sex isn't everything!

I am already there!

   

In a few days I will be turning 71. It's been a bumpy ride punctuated with bursts of hard work in raising 5 children punctuated with the misery of chronic illness adding to the joy.

I think it's normal to feel tired in your seventies, but when one has fibromyalgia, polymyalgia, heart disease, spinal problems, diabetes and pulmonary hypertension as constant companions, well- it makes me tired just thinking of doing the smallest task.

Lately I have been reflecting on my life and trying to simplify it even more than it is now. And I have done a few things to avoid feeling false guilt and perfectionism.

I have unfollowed all my online groups for cooking, housework and household tips and decluttering. I still do these things, but at a snail's pace. I don't have to add to my perfectionism by fueling it.

I have also unfollowed all my feeds for pregnancy, childbirth and breastfeeding as it tends to make me nostalgic for something that is no longer a part of my life.

Similarly, I have gotten rid of household check lists and calenders about homemaking routines. They never work for me as I am so often out of spoons due mainly to fibromyalgia flares.

All my married life I have written out meal menus but now that Chris is very often not hungry or at least is very picky, I must cook to adapt to his fancies for dining thus invalidating my menu plan..

Always an Aldi girl, I now shop for groceries totally online, visit my doctor via phone consult, order  my prescriptions online and pay all my bills online.  

I rarely leave the house these days. Everything is slowing down for me these days and I need it to stay that way. 

Even with help once a fortnight for housecleaning, I find just running the home during the two weeks between cleans physically taxing. 

As I said, I think it's OK to slow down when you age...and I am no longer like the fairy godmother... managing my home easily and without much effort. 

I just have to accept that like the fairy godmother I am not getting old: I am already there! 

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.

 

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. 

Do you find that too?

We are in need of haircuts but it is such an ordeal getting out that I placed a query online in our local group on FB and a hairdresser who comes to the house pm'd me. 

It will be nice to have my hair styled short. Not sure what to ask for- I can't have a fringe or hair on my nape because with fibro, I itch too much and scratch my skin...

Fellow fibromites,  do you find that too? 

This is a great help

 

As you know, I have been having problems with my blood pressure. So I have had to plan my days to include a lot of rest without having my house looking like it's been burgled.

Not for the first time, I have integrated the Lists for a chronically ill home keeper into my day. I will be following these Lists from Sylvia Britton of Christian HomeKeeper for the next week or so.

I find them invaluable. Here's the link if you want to try them too.

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.

That to me is true love

 

So I have had such a flare up of my fibromyalgia that I went back to bed leaving a kitchen full of dirty dishes. Dishes that sat on my draining boards and in my sink.

I just needed to recoup some spoons and I was hoping to awake with at least enough to clean my kitchen.

You can imagine my joy and surprise when I woke up a few hours later to find that Chris had run the dishwasher and wiped down my kitchen benches! 

Now those of you who suffer from chronic illness, especially fibromyalgia know that we can become victims of the rollercoaster of emotions. Grateful tears ran down my cheeks and I rushed to Chris and hugged him tightly. 

He was surprised at my emotional response to his help, but it wasn't just a helping hand in home duties. It was a feeling of nurture and love. Especially when he is battling with severe health issues himself.

It was an act that solidified our union as a team, our home as important, and his wife as cherished. And this cherished wife was very aware and very encouraged. Why? you ask. 

Because I know exactly how many scarce spoons it took him to do this. And that to me, is true love.

You just got to pass it on!

I ran our new irobot roomba vacuum last night. Xena hated it and ran under the bed. Roomba chased her under it and she came out like a scalded cat and bushy tailed. 

Don't worry, she got lots of cuddles afterwards, but it was the funniest thing that's happened in a long time. 

I highly recommend a roomba. It's very easy to operate and manages interchanging between carpets and tiled floors. It's really great when you have cats or dogs as it gets the fur vacuumed up easily. 

Last night ours kept bumping into things as my phone is too old to download the app to schedule and program it. It still did a great job. I am keen to see how much better it does when I update my phone.

We are just staying home this weekend as there's going to be a few days of physios and doctors for Dianne next week. Being oldies, we are bushed! But ya gotta do what ya gotta do! Fibro flare or not!

I am not getting paid for advertising roomba but when you find something that helps with fibromyalgia and other chronic illnesses, you just have to pass it on! 

We need 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.

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...

Sex isn't everything.

This picture reminds me of Chris and I in the kitchen... I often can be washing the dishes and he will come behind me for a cuddle.. I still blush and giggle like a school girl!  I usually go weak at the knees when he kisses the back of my neck, and I turn around and kiss him passionately.  Finally, we break away, breathless with romance and laughter!  Most times, he then pitches in and helps me finish washing up.

This little dalliance of ours to us is quite romantic and that coupled with the fact that Chris helps me with the dishes, makes me feel nurtured and happy- it doesn't take a lot for me! Which is good, because money is short for a lot of flowers and chocolates.

We do go out together for meals whenever we can salt away a little money.  Nothing too expensive, but we bring our own ambiance!  Just looking into each others' eyes and holding hands over the table reminds us of our early days together and keeps us focused on each other.  Truly, we do adore each other.

Because money is in short supply, and because we constantly laugh together and cuddle often, we feel that special occasions such as Christmas, birthdays and Valentines' Day aren't necessary to show affection and love. We in fact, do not buy gifts for these for each other. And it is perfectly fine with us. We do, however look at our wedding photos and reminisce a lot on our anniversary or any other date significant to us...

I think it may be the fact that we are an older married couple that makes it easier to see romance in ways that younger couples don't.  With age and fibromyalgia and heart and back problems and Chris with his diabetes, sex is either umcomfortable or impossible. So both Chris and I look forward to a bubble bath at home with a good back wash and nail trims or a foot or back massage.  We do that for each other on a regular basis. To us, nurture is romance!

Chris loves me bringing his breakfast into him in the morning. This to him is romantic and although his not buying me presents and sending me cards may seem that he is an unromantic man, nothing could be further from the truth.  He sings to me! We have some special songs that he says were written just for us, and he will play them on the computer, and take me in his arms and croon to me as we dance slowly round the living room.

Because I am often in hospital, Chris shows his care by staying with me most of the day until visiting hours are over, just stroking my hair and holding my hand. Or he will come with our laptop and headphones for me. My heart melts with love for him.  We can't stand to be away from each other.

Illness, medications, no spoons and age have curtailed our times of intimacy, but we manage to show love to each other in ways that are imaginative, erotic and very caring.  There is absolutely no thoughts of unmet needs- love can be expressed in ways other than full sexual intercourse, and we delight in each other regardless! If sex happens, it's a bonus!

So we don't care about no presents or cards for Christmas, or birthdays or Valentines' Day-  with the romantic sparks that still fly between us, and our little dalliances, every day is Valentines' Day. 

I thank God for Chris as I am one very blessed wife, and I tell him often.... he finds that very romantic too! We are proof that you can live without sex! Sex isn't everything! (This post has been written with my husbands' permission)

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.

 

Normally abnormal

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 angina, spinal and knee 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 normally abnormal.   

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

Our little haven

 

So yesterday was a day of horrible fibromyalgia pain and fatigue. I felt a little down so I came to my couch and sat next to Chris for a cuddle and rest. 

We love feeding the birds that come into our back garden and all through the day, our garden is like an airport. Birds of all types come to dine and drink and it is so restful and fun to watch them.

They have their own little antics and natures and they can be quite amusing. And apart from watching their different natures and antics they have something else that we find very attractive: they have babies.

It's such fun to watch the mothers feeding their babies and to watch the babies venture further and further from her as they learn to feed themselves. They fly but are still juvenile and yesterday their mothers were distancing themselves from their chicks and refusing to feed them, much to their annoyance. 

The magpie juveniles are especially raucous and squawk even with food in their mouth. They are almost always feeding. The minor bird mummy also is weaning her chicks from her and as soon as she moves away, they follow like the duckling family juveniles do. So fun to watch.

But by far, my favourite birds are the Kingfishers which have also had babies. Whilst laying on the couch, I can see outside and I was delighted to see a mother Kingfisher with one of her three babies on our garden swing.

They were watching the porch which was covered in birdseed for the galahs and rosellas. I had thrown out some cut up luncheon meat, and they were waiting for the magpies to vacate the porch so that they could dine. Kingfishers are shy and besides, magpies are three times their size. So they wait.

It is the season for little white cabbage moths too. They are flying around the agapanthus plants and I guess they are mating because they seem to be in pairs. As are the pigeons that come for the seed.

There are three that regularly call in and partake of the parrot seed on the ground. There's a little female who just wants to eat, but there also is an amorous male who has romance on his mind. He pursues her constantly and hopes to make her his by dancing for her. 

He fans out his tail feathers and hops towards her, then takes a few steps back. He repeats this courting gesture until she tires of him and runs a few feet away. But he is insistent and pursues her over and over again. I hope that he wins her heart as it is such fun to  watch the young birds as they leave the nest under their mothers supervision.

We have a bird bath/feeder in the back garden which we used to fill with seed, but now with torn meniscuses in both knees, I cannot get down the steps to fill it, so they get fed from the back sliding glass door. I just toss the food onto the back porch. They don't care where it is. 

They are quite used to me now and I have them almost eating out of my hand. So much so that as soon as I open the door, they come flying in to the garden from all directions, calling each other.

We have water in the bird feeder and in a plastic container in front of the steps. They bathe and drink and sing and they enjoy our back garden as much as we do.

It's a lovely place to recoup one's spoons during a fibromyalgia flare. The daily scenes are so peaceful and we love our little haven and we know the birds think of it as their haven as well. Their constant visits and frequent broods of chicks speaks of a place of plentiful food, water and safety.

We are grateful God lead us to this little country town- it is a gift from Him: our little haven

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

Oh no, no ho ho!

So we had our little granddaughter Taylah for a few days, and picked her up Friday, but it didn't go to plan. After a full day, in spite of me making an effort to play with her and give her my full attention, she decided she wanted to go home. 

She said she missed her mother, and so we made the 2 hour trip each way to drop her off again. Even though I didn't drive, I was exhausted. Even being a passenger is gruelling when you have a fibromyalgia flare, angina, sore back and broken knees that throb with every heart beat.

I had bought a rolling pin with the nativity on it and planned to make Christmas cookies as gifts. Well, I did make cookies as promised with Taylah helping me, but not the ones I planned to give away. They were plain cookies. 

When I told her we had to refrigerate the dough for a couple of hours, she said she didn't want to have to wait. So the Christmas cookies didn't come to pass. 

The Mother of all Flares has come to pay me yet another visit- or maybe I just haven't recovered from the last one. I am feeling so exhausted I could collapse. So yesterday I had a nana nap and went to bed earlier than normal.

I was hoping that would do the trick and give me some wind under my sails, but in truth I awoke with no spoons. No spoons on Christmas Eve is a disaster!

We were supposed to leave our home around 11am today and visit my children and grandchildren but I felt unsteady on my feet, due to wonky knees, foggy in head due to fibro and hurting so badly with my spinal stenosis that I had to cancel.

Tomorrow we are supposed to see Taylah open her presents, visit my sister and son for lunch and go to my step-daughter's for afternoon tea before driving the two hours home before dark.

Truthfully, unless I have a miracle, we won't be going. After I finish chatting to you, I will be letting the Tramadol work by going to bed to rest. I really want to feel better.

As much as I love my family and Christmas, it would seem that it is going to have to be cancelled. It's a pity but it is what it is! Besides, nobody wants a spaced out whiny woman around them on Christmas Day. And I don't want to her, but unfortunately it's hard with illness to have any ho ho ho.