Surviving the big "C"

No, this isn't a post about cancer.

How do you survive this holiday season with your Fibromyalgia or other chronic illness?
If you're anything like me, this season probably brings more people contact than you can handle, more intolerable foods that you have to eat and more flare-ups that you can count...so is there any way you can minimise this??

Here's my top five tips:

1. Plan, pre-plan and pre-pre-pre plan
If you love doing things like baking goodies, then there is no harm in starting to make them from November, to give yourself time to slowly make them, rest and then start again. There's nothing worse than having to push yourself to get it all done in the last minute.

2. Buy them early, wrap them slowly
Same goes for pressies.. Try to get your shopping done early. It also helps to do your shopping online, that way you can do it in your pj's with a heatpack to soothe your pain. If you can afford it, pay a little extra to have your presents sent wrapped. Or else, try to do one a day or two, if you can manage it. Christmas is no time to forget your mantra - pace, pace, pace.

3. Two kiwis and a lemon
If Christmas finds you eating a whole bunch of unhealthy or intolerant food, that leaves you bloated or heavy or constipated, try a home remedy. Make sure you have two kiwis atleast a day. I also find that soaking a slice of lemon in water not only makes a refreshing treat but also triggers your liver into cleansing your body. Plus, as an added bonus, they're fructose free!

4. Enjoy, even if only for the moment
Make sure you do enjoy yourself. Have a laugh. Chat to some family. Remember, you are not your illness. Sometimes, it helps to forget for a while and remember what life used to be like. Have some cake. Have a glass of wine.

5. Schedule some recovery time
This is possibly the most important one. Anticipate that the season is going to be tough on you. Plan some time doing something that helps your body recover afterwards, whether that's a warm bubble bath, a good cry, a long nap or anything else that comforts your body. You deserve it!


Do you have any other tips that have helped you in the past? That are helping you right now? Please do share.

Most of all, have a wonderful Christmas and a blessed New Year!
Love to you all.. xo

It's been a long time coming....

Hi friends,

Sorry for the long delay between posts. As you can probably appreciate, I have been struggling with back-to-back flareups, that have been never-ending!

Still, as we approach the end of another year, there is always hope... Hope that things might get better, hope that we might be stronger & hope that the next year might see us coping & surviving..

Wishing you hope today, no matter what kind of day you are facing.
xo

An App for Everything..

If you're anything like me, you've got one or both of the following two problems:

Problem 1: You have way too many medications to take and you know that research shows that medications are better absorbed if you don't take more than one at a time.

Problem 2: You cannot seem to remember to take your medications on time.

So what are the solutions?

Solution 1: Bang your head against someone with a good memory and hope it transfers across.... OR

Solution 2: Get this Pill Reminder App on your phone (This is an Iphone App, but there may be one for Android too)..

Now I've tried a few of these kinds of Apps and found them useless..This one is a little better.

You can set reminders so that you phone tells you to take each medication at a certain time. The other convenient thing you can do is set the number of medications you have so that it reminds you when you need to fill another script, which is perfect if you have a memory like mine..

Have you found any other nifty ways to help you remember to take your medications?

Laughter Lost Episode 9: Today's Forecast

Forecast's been true for me today... How about you?

Weight Lifting Champion

People sometimes ask me, why do you look so stressed? Why are concentrating so hard that you look like you are frowning? 

Answer: Because I'm using all my energy to ignore a multitude of pain; On top of that, I'm working just like you are...I have the weight of the world on my back.. If you don't believe me, try carrying it yourself & you'll look like me too.. 

Thank God that while we may feel like this, we have a God who holds the hold world together and asks us to lovingly cast our cares and concerns on him that we might find relief.

"Throw all your worry on God, because He cares for you." 1 Peter 5:7

These are my days...

(c) Chronic Faith

My Days © ChronicFaith

It hurts to sit

It hurts to breathe

I can barely move

I can barely see

Can’t look outside

Can’t run or hide

Can’t wake up in the morning

Or sleep at night.

Can’t feel my fingers

Can’t feel my toes

Yet the pain that never ends

I have in crores and crores

Can’t do my job

Can’t study or read

Even my Bible looks like

It’s in Aramaic and Greek.

This is my life

These are my days

Can’t wait until tomorrow

Can’t wait till today ends.

Spring pokes its head...

Judging by the crazy winds and the cold weather outside, you might not notice it, but never fear!! Summer is coming!

Don't believe me??.. Here are a few hints of it I noticed on my walk today -

The coming of spring always makes me happy because it reminds me of three things:

1. There is an end to winter:
Even through the tough times you are going through, there is an end in sight. I can't promise you whether it will be healing in this life or whether you will have to wait in Heaven, but God has set a time for His return when He will take us home to be with Him forever in a land with no pain, sickness or tears.

2. There is beauty in the wait:
Just as these gorgeous spring flowers remind us that summer and good days are ahead, our lives and our attitudes should remind others that Jesus is coming.

3. There can be joy despite winter because of the truth of summer:
Even though things appear gloomy and we are unwell with no tangible end in sight, we can be joyful because we know that God has made a home for us in heaven. It is coming.. It is not question of whether but when!

So, lift up your heads, like these beautiful daisies in my garden, and keep your eyes fixed on God.

Why? Winter is almost at an end and Summer is coming!

Food for the Soul #2: Lone Prisoner

Here's today book spine poem: 

Lone Prisoner

The memory keeper's daughter,

A prisoner of birth.

The sky isn't visible from here;

Silent pain. 

Food for the Soul #1: In Tough Times

Today begins a week of Book Spine Poetry - What is this, you ask? It's small simple poetry created from the books on your book shelf by joining the titles of books stacked together. Click here for more details.

Here's mine for the day:

In Tough Times

Living with Fibromyalgia,

Nothing in my hand I bring;

How long, O Lord?

Rejoice!

God keeps his promises. 

The Best is Yet to Come

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal” 2 Corinthians 4:16-18

At a first glance of reading this, you might think whether this writer really knew much about suffering. How can his troubles be light and momentary, while mine are hard and never ending? If only he had seen my life – I am endlessly sick, I have no time for family or friends, I can’t work….  

Brother! Sister! Let me tell you - Paul, a passionate follower of Jesus, wrote this passage and he, by no means, had an ‘easy’ life. In 2 Corinthians 11:24, we read that five times Paul received forty lashes, three times he was beaten with rods, once stoned, three times shipwrecked and constantly in danger at sea and from bandits, countrymen, Gentiles and false brothers.  He went long periods without sleep, battling hunger, thirst and cold, all whilst facing the  daily pressure of his concern for all the churches.

That’s a long list; so why in the world would Paul think that these troubles were “light” and “momentary”. Was he delusional? Did he love being persecuted? Did he enjoy being shamed? Of course not! He was hurt by the pain he faced, just like we are.

So if that’s not the case, maybe, we should re-read verse 17.  “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” Paul appears to be making a comparison between his troubles and the eternal glory we have in Christ.  What he is trying to say is that all these sufferings and struggles, as horrible and painful as they are, are nothing when compared to our inheritance in Christ. If these are our troubles, our joy in heaven will be that much greater!

Earlier in 2 Corinthians, in chapter 4, verse 14, Paul reminds us that God, who raised Jesus from the dead, will also raise us to be with Him and share in the above inheritance.  In 1 Peter 1:3-5, Peter, another passionate follower of Jesus, tells us about the glorious inheritance that awaits us because of Jesus – an inheritance that will never perish, spoil or fade. This is our joy, this is our inheritance – being adopted into God’s family and living with him forever. No harm or suffering in this world could compare to this joy that will be ours.

Does that seem a little incredulous?  Do you find that hard to believe?

Think of this – A woman in labour goes through unimaginable pain to have her child. This could take hours or even days. Childbirth has been described as one of the world’s most painful experiences; still, women go through this willingly all the time. Why?

Because of that moment - the moment when the nurse hands over the baby, when she holds him/her in her arms for the first time; she knows that it’s worth it. All the pain, hurt and suffering she went through cannot be compared to the joy, honour and the privilege of being a mother to that beautiful baby. It will be the same, if not more, with us when we go to heaven. I am sure that there will not be a soul in heaven who does not think that all of life’s suffering, were light and momentary compared to the eternal glory they then have.

Friends! What are your troubles? What causes you pain? Is it unemployment sickness, poverty, hunger or thirst? 

Do not lose heart. If you believe in Jesus and accept His death in your place, your eternal glory awaits you, because of Jesus’ sacrifice for you. 

Remember your troubles are temporary since your eternal life with Jesus will last forever and forever. Hold on to your inheritance, in faith, which is freely given to you through Jesus Christ.

This post is adapted from my contributions to EbenDavid Ministries & Charities newsletter. 

The Glue that holds me together

I have to admit, like most women, The Notebook is one of my all-time favourite movies! The love between Noah and Allie is epic & almost every female I know swoons when everyone tells Noah to leave Allie's side as her Alzheimer's deteriorates.. but Noah simply says, "Allie is my home".. Every woman wants to be loved like this! If you haven't seen this, you really need to see it, ASAP!

It makes me wonder though.. Is Noah & Allie's love really the most epic love?
Well, no. Romance aside, God stands in front of us with a love that is far more deserving, fantastic and all-consuming, who has forgiven us infinitely more than Noah did Allie & who has loved us with a love that will last forever. He stands at our doors, saying I am your home. Come make your home with me & let's spend eternity together in love.

People often ask me how and why I still believe that God loves me even as I get weaker and sicker. The answer is simple... The more weaker I get, the more convinced I am that God loves me and works in all things for my good. Now God has always been wonderful to me. He made me & he has listened to and answered my prayers since I was young. But never have I known His love like this than He has shown me in the past few years. From helping me and supporting me, he now does almost everything for me. He helps me wake up in the morning. He makes me fall asleep at night even despite the weaning medications and the unbearable agony. He is my friend and companion when all my friends desert me simply because they don't want an "ill" friend. When I am treated unfairly, he works in the hearts of colleagues and others to restore love to the relationship. He holds my hand physically each night and I know that when I leave this earth to go home with Him, I will die in His arms.

Truly, in all things, God works for the good of those who love Him! He holds me together and he's by far the greatest love I have ever known. No man could even come close to comparing with this EPIC LOVE.

Today's theme song...

I feel so broken
From head to toe
I'm curling away from high
Doubt I could rise even if I tried

Yet there's people awaiting
And never ending lists of tasks to be done
For now I have no choice
I wish I could hide rather than run.

Good things come in pairs...

My second award! Inspired by the Sisterhood of Travelling Pants, this is an award for female bloggers to encourage the spirit of sisterhood. I received the award from Emily at  My Inspired Life with Fibromyalgia. 

Here are the rules:

1. Thank the giver

2. Post 7 things about yourself

3. Pass on the award to 7 other deserving bloggers and inform them that they have been nominated

4. Include the logo of the award in a post or on your blog

7 things about Me!

1. My favourite colour in the whole world is purple. Although this winter, it is closely followed by sea green. 

2. I've never had pets before, unless you can count goldfish. One day, I'd love to have a cute puppy. 

3. I love being creative. I make my own jewellery, I do cross-stitch, knitting and some stitching as well. Check out my creations at My Hands Still Work. 

4. I love nature. I could think of nothing else more wonderful than to watch a beautiful sunset, take a walk outside or just sit on a cliff and watch the sea. 

5. I have lived in 7 different countries in my life. I've been moving countries since I was six months old. 

6. Fibromyalgia consumes a lot of my life & thinking, but one day I will conquer it and things will be different. 

7. I love reading with a passion, particularly fantasy. My favourites at the moment are the Eragon series and anything written by Ted Dekker. 

7 Deserving Blogs:

1. Erin at Chronic Christian Crafter

2. Simone at FibroModem

3. Simple Expression 11

4. Xocolatchic

5. Spooniesta

6. Young Fibromyalgia

7. Fibromyalgia and Faith

There you go! Congrats to all the nominees! You all are truly inspiration blogger sisters to me & I appreciate each and every one of you! 

My very first award - Sunshine Blog Award!

Over my past six months of blogging, I've been hearing lots about awards.. but I've never actually received one... until today...

My very first award - the Sunshine Blog Award - thanks to Emily @ My Inspired Life with Fibromyalgia! This award is given to "bloggers who positively and creatively inspire others in the blogosphere".

Here are the rules:
1.  If you are nominated, you must blog a post linking back to the person/blog that nominated you.
2. You must answer some questions, nominate ten fellow bloggers and link their blogs to the post!
If you do this, you get the award! You can use the image above to either put on your post or on your blog itself!
3. You should comment on your nominees' blogs to let them know you've nominated them.

Here are my questions:
1. Who is your favourite philosopher?
Actually, I don't really have a favourite per se, or many that I even read about. But one of my favourite wise-men is a man called C.S.Lewis. He wrote many books including the famous Narnia series, a lot of books that have shaped my life and thinking.

2. What is your favourite number?
My favourite number is 3 - I believe all good things come in three (well, actually not really, I just really like the number). Plus three reasons why always looked good in essays at school! :)

3. What is your favourite animal?
At the moment, elephants. I just came back from Sri Lanka where I visited the Elephant Orphanage, one of my most favourite places in the whole world - check out these cuties!

4. What are your Facebook and Twitter urls?
Facebook: Faith&Fibromyalgia; MyHandsStillWork
Twitter: @DharshiSpeaks

5. What is your favourite time of the day?
The first six seconds after my alarm rings; For six seconds, while I am still waking to the world, for six seconds, there is no pain; for six seconds, I am a normal person & Fibro is just a word; for six seconds, I can jump out of bed and do whatever I want; for six seconds, I can be the me I want to be. For six seconds, then it all comes rushing back .

6. What was your favourite vacation?
My favourite vacation in the whole world so far was when I visited Switzerland. It's such a beautiful land, full of nature (which I love). Mostly, it's a place where you can go up a mountain & enjoy some freezing cold weather, get sick of it and within 15 minutes come down & run across some meadows under the warm sunshine.. Absolutely perfect! :)

7. What is your favourite physical activity?
Physical eh? Well, Fibro pretty much stops any physical activity possible, but I do love dancing! When I'm alone in my room, and especially when I'm feeling down, I play my favourite tunes & dance away (regretting it ten minutes later, when Fibro delivers the pain) .. I'm the strange person you see on the train, with their headphones in their ears, drifting off in their world and tapping their feet and dancing..

8. What is your favourite non-alcoholic drink?
This one's easy... tea of course. I love tea & I drink it like a newborn drinks milk. I love all forms of tea, normal, herbal, uncaffeinated etc. My favourite ones are: Dilmah Extra Strong (when I need a gentle wake me up), Rooibos & Chammomile (when I need a chillax) and trying as many new varieties of teas as I can find!

9. What is your favourite flower?
My favourite flowers are daisies. For a similar reason as Emily, I love the simplistic nature of daisies. Yes they are weeds & they do grow freely in all sorts of random places. But to me, they're sunny and bright even when they are growing out of difficult places.

One of my mates at university told me if I had a boyfriend, I would be the cheapest date ever, because the guy could just break into someone else's backyard and rip off a few of their daisy weeds and I'd be thrilled! Lol :)

10. What is your passion?
My passion is to a person that is caring and always there for anyone I call friend. I want to paint the world in beauty. I want to make this world brighter even when I cannot muster a smile.

My 10 Blogger Nominees (in no particular order):
1. Chronic Christian Crafter - for being a loving friend & a great encouragement to me & others
2. Fibromyalgia and Faith - a sister blogger so close in words
3. Simple Expressions 101 - a new friend with many a wise thought
4. The Spooniesta - a lovely new blogging friend
5. FibroModem - A woman who is continually looking to make a difference each day
6. CharisLah - A gentle encouraging spirit
7. Human In Recovery - A new blog I stumbled upon thanks to the Ultimate Blog Challenge
8. Three Worlds of BG - for being an inspiration to me both in blog and in real life each day
9. Bek in Training - For her words of wisdom and creations of beauty
10. Mostly Fine, Chance of a Shower - For overcoming many battles and still remaining joyful

There you go! Thanks again to Emily @ My Inspired Life with Fibromyalgia! Truly, you have made my joyful by giving me my very first accolade! :)

Laughter Lost Episode 8

Sourced from FibroTV

I would love to see someone try some of these.. Definitely worth a chuckle..

Gentle hugs to you all.. xoxo

Something new & exciting

Friends,

I'm about to embark on a new & exciting adventure..... Don't worry, it's nothing drastic!

I've decided to start a new blog called My Hands Still Work, showcasing some of the jewellery, cross-stitch and other craft items I have made and make to creatively express the pain and joys of my daily life.

Please come check it out! :)

God, where are you?

God, where are you?

(c) ChronicFaith

I scream but no sound comes out

I beg but my pleas appear unheard

I’m desperate but my prayers disappear with the wind.

God, where are you?

I struggle and I fall apart

I am mocked & made a fool of

I cry myself to sleep,

God, where are you?

I am in agony and I sweat in anguish

Pain fills me from head to toe

I can’t breathe, I can’t move

God, where are you?

I am filled with grief

I have lost the one I love

I am alone & abandoned,

God, where are you?

When you pleaded, I saw your heart.

When you cried, I collected your tears.

When you were in pain, I held your hand.

When you grieved, I mourned with you.

  

I was never far, my beloved daughter.

I never left your side

If only you could see tomorrow, you’d understand

What I’ve done for you & why.

“As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” Isaiah 55:9

God is never far from us & he is always working for our good, even when it doesn’t seem like it. Romans 8:28 says that “in all things, God works for the good of those who love him, who have been called according to His purpose”. Because we, as humans, are limited by so much: by time, by our experiences, by our lack of patience  & by peer & cultural pressure, it is very hard for us to see beyond the here and now. But God is outside of time & space and He sees these things. He knows what is best for us, today, tomorrow & each day after that. He is not only interested in providing for us now but for us in the future & for all His children, the same. As His Word says in Isaiah 55:9, “as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” What a great & wonderful God we have who looks after us & provides for our every need and want. Let us learn to trust Him in all circumstances, knowing that our trust is placed in a loving God who prepares all things for us & for our good both now & into the future. 

Laughter Lost Episode 7

I saw this card in a store a couple of years ago.

Don't we all sometimes wish this about our problems, particularly fibro?

Laughter Lost Episode 6

Been tempted to do this once or twice???

Laughter Lost Episode 5

Today is one of these days where I wish this was true...

Make the Invisible Visible

A friend of mine has issued this small, simple way to raise some awareness for fibromyalgia. 

You don't have to have the illness to raise awareness. Even if you could do this & keep it as your profile picture for 1 day, it would make a difference! Of course, the longer it last, the bigger the difference made. 


Here's how to do it:
• Open this picture via this ppt link: http://fibromodem.files.wordpress.com/2012/06/spread-fm-awareness1.ppt

• Your computer will ask what you would like to do with the presentation – You want to OPEN it.• Once open, you will want to INSERT a lovely photo of yourself.• Then press 1) FILE; 2) SAVE AS, then pick a name & save it as type *jpg.• You can then upload it to your status and you’re ready to spread awareness


Remember, you don't have to have Fibromyalgia to spread the word! 


(c) FibroModem

Laughter Lost Episode 4

For those of you who like me, who just can't clean regularly because it costs far too many energy and pain spoons! 

Enough with guilt trip! There are better things we both could be doing with our spoons.. that's all I'm saying.

Laughter Lost Episode 3

This is me today....

Laughter Lost Episode 2

Here's a creative solution to our pain... Have you tried this???

Laughter Lost Episode 1

Some days it's just really hard to laugh.. even  at how pathetic your day is.. so here's something that you can hopefully relate to that will put a smile on your face...

We've all been to doctors like this one.. In fact, I went to one just recently. This doctor took 10 minutes to write down the name Lyrica on her computer.. I didn't realise it was that hard to spell...It would have been quicker to google it..

My Famous Red Kidney Beans Masala!!

One of my famous recipes.. if you love spices and beans.. you'll love this one! 

Ingredients:
2 cans red kidney beans
2 tsp turmeric
2 tsp red chilli powder (adjust depending on individual spice preferences)
2 tsp coriander powder
2 tsp garam masala
2 large tomatoes chopped finely
1 onion chopped finely
Olive oil
1 clove garlic
2 slices ginger
2 pinches cumin seeds

Serves: Approx 4-6

Method:
1. Cut the onion, garlic and ginger into small pieces and fry.
2. Open red kidney beans cans and drain, saving the liquid for later. Rinse the beans & set aside.
3. In a pan, warm the oil and add cumin seeds. After browned, add in remaining spices. Heat for a couple of minutes.
4. Add tomatoes. Stir until juices are released.
5. Add red kidney beans. Adjust spices to taste.
6. Simmer for 10 minutes. Add liquid from can, stirring occasionally if needed.

10 things I'm really looking forward to in Sri Lanka

So, I'm going to Sri Lanka this weekend for one of my best friend's wedding. I've been waiting and longing for this day to come for months. And though it will have a big unimaginable impact on my pain and fatigue levels, I'm really looking forward to it & here's my top 10 reasons why:

10. Some warm weather (just for a change really, even though most probably the humidity will make my pain worse)

9. My gran's cooking - nothing like some good ol' fashioned Lankan cooking - Kiribath, Fish Curry, Brinjal... yum, yum, yum!

8. Travelling alone (this may sound like a weird one as travelling alone is usually more stressful, particularly since carrying my own suitcases will cause me unimaginable pain, but I'm looking forward to being alone for atleast 8 hours straight; 8 hours where I'm not forced to pretend to be ok to stop hurting others feelings; 8 hours where I can blubber when I feel like it and not have the world judge me; 8 hours with no expectations)

7. The elephant orphanage in Pinnewala - I visited this when I was younger and the elephants were so cute!
I absolutely loved it especially their bath time and watching the adorable baby elephants.

6. Giving gifts - Nothing like feeling like Saint Nick for a day, but also it's a good opportunity for me to feel like I am showing that I care and love my friends and family even though I can't spend a lot of time with them because of my fibro.

Half way there.....

5. Seeing my cousins - In all the world, my cousins remind me most of my mum. They are the most loving, caring people you could ever meet and I count each day as a blessing that I get to spend with them.

4. Frien-unions! I get this awesome opportunity to see my friends and best friends whom I haven't seen in 6 years! I'm so excited that I have been telling everyone I can that this will be the highlight of my trip. I feel so lucky and blessed!

3. The fact that I get to be there for my bestie's wedding! I'm so excited that I get to share this wonderful day with her.

2. My other random bestie's sense of humour... She could make a dead chicken laugh. She makes me smile even on my darkest days and let's face it; we all need a friend like that!

And drum roll, please....................

The number 1 thing I am looking forward to is:

1. Being seen & being loved. For the first time in 6 years, I am going to be surrounded by people who knew and loved me, the me I used to be before Fibro took over; People who see the fibro me but also remember who I am on the inside; People who love me despite the zillion ways I fail. Above all, people who can see my heart and soul.

Catch you all once I'm back... :)

For those really difficult days...

Celebrate all your achievements, however small you may think they are.

No matter what you've been through, you survived today! And I'm proud of you!
You did it! :)

Fibro Myth #6: It's all in your head!

How many times have you heard either a doctor or a friend tell you that your fibro is all in your head? That if only you focused on something else, the pain would just disappear. If you've been sick for a while, chances are you've probably heard this atleast a couple of times.

Unfortunately, friends, some people treat us this way, and perhaps even more shockingly, some doctors treat us this way too. If you're not a chronic pain sufferer, you may not understand the impact of hearing such a statement - Imagine this. You find out you have a brain tumour. It's fairly serious. It's causing your cells to mutate and your muscle functions to be disrupted. You go to your doctor & show him the scans and explain. This is what he says:

You're probably laughing now, but is our fibromyalgia any different. Most researchers and doctors agree that fibromyalgia is caused by a change in the neurological system which causes our brains to perceive pain differently. So technically, yes, just like a tumour, it's all in our head. But what difference does that make? Just like you wouldn't ignore a tumour just because it's in your head, so it is with our fibromyalgia. Only a fool would walk around with a tumour, simply trying to push through it! And yet, that is what a lot of people tell us to do.. Friends, do not get caught up in trying to "push" through and simply survive. Take steps to help yourself, seek assistance and pursue treatments and strategies. 

Sure, the fibromyalgia is in your head (ie. brain), but that doesn't make it any less real or painful. 

Listen to your body..

Ever walk through a really busy street or stand in a really busy train? With people shoving you left, right and centre; where you feel like you're moving at snail pace or moving backwards against the tide? When all your effort doesn't result in you getting anyway except hurt by the people pushing you aside as they bustle around?

Ever feel invisible and ignored amongst a crowd; that though you are screaming for help and love, no one around you appears to hear or notice you? 

This is how your body feels when you push through to keep doing things. It feels ignored. It sends out tired and pain signals to alert you to the fact that it is in distress. If still unheard, it causes you to crash, in hopes you'll learn to rest and take care of yourself better next time.

If you talk to anyone who's successfully managing their fibro or chronic illness and ask them about their life pre-illness, they will almost certainly tell you that they've learnt to slow down over the years. They've learnt to pace themselves and not deplete all their energy stores overnight. They've learnt to listen to their body and hear it screaming for help.

Do you?

If not, perhaps now is the time to start. How about doing something simply for your body today? Get a massage or have a long luxurious bubble bath. Ask someone for a soft hug. Let yourself cry if you're feeling down or have a laugh otherwise. 


Trust me. It will make a difference. Even if you're not chronically ill, start today. Your body WILL thank you. 

   

Unexpected delays & joys....

It has been about a month since my last post.. and apologies to all for that..
I have no other explanation for it except my lovely buddy, fibro..After a horribly difficult exam experience, followed by immense levels of pain & busyness, culminating in an interstate trip, my body had no spoons to maintain blogging..

But such is the life of a fibromite & in some ways, us all... Life never is a straight line; Strength comes and it goes.. and we sit strapped in the ride, ready to confront it all..

Having said that, life has had some good turns in the past month:

1. I have officially been put on the first set of working pain medications for my condition - I feel like the clock has turned backwards for me. On a good day, I have 50% less pain! 50% - that's huge for me! On a bad day, it's only a little relief, but it's still more relief than if I didn't have the pain killers... So what are these new wonder drugs you ask? They are Lyrica and Cymbalta. If you've never heard of these or you have not been previously prescribed pain medications for your fibro, it's worth having a chat to your GP about them - there are side effects and it is NOT PBS-covered so it is fairly pricey, but if it brings relief, it will probably be worth it.

2. My horrible exam experience which I mentioned earlier.. Today, there emerged a silver lining: I found out that I passed the exam! Hurrah! In some small way, the struggle & pain accomplished something - what a relief!

3. God has yet been faithful! Despite the ups and downs, and the crazy levels of pain and fatigue, he has been with me through it all. He has even restored some friendships and relationships for which I previously had no energy to pursue. He has strengthened old bonds and created new ones.

I don't know where your life is at today - Maybe you're enjoying the wind in your hair as you rise to new heights or maybe you're plummeting down the ride. Either way, hold on to your God and he will guide you through and be faithful to you!

"I delight in the Lord, 

my soul rejoices in my God.

For he has clothed me with garments of salvation

and arrayed me in a robe of righteousness."

Isaiah 61:10

The world often sucks but God is forever good

Today was just one of those days; you know the days I'm talking about: the ones where you think you really shouldn't have got out of bed.

The day starts off with expectation.. not the expectation of anything special, but the expectation of something to make life with your chronic illness just a little easier. You're not asking for a handout, but acknowledgement of the fact that you are trying to &  constantly accomplishing things far beyond your reach... You wait...but nothing comes.... You fight anyway, because you are determined to finish. You fight because you are determined to see your dreams come to life, even with the fifty sumo wrestlers sitting on your head & pain in every fibre of your being.. You fight. And you win. You look around but the world hasn't even stopped to notice.. Nobody seems to care.

On to the next dream.. You wait...You expect.. Once again, nothing happens..You fight, You win.... and on it goes... One by one, the weight of those sumo wrestlers & the pain grows.. until it's too much, until it shoves you to the ground and pummels you bit by bit. You try.. You wait.. You expect.. Nothing happens.. You have no fight left.

Today was one of those days. I was promised extra writing time on an exam. Five minutes before the exam started, they denied it to me. I looked across the room and my heart broke. There were others there - those with broken legs and all.. Of course, they deserved to be there, but so did I. Is not my pain counted as even comparable with a broken leg? Surely, it is ten times ten worse...There was nothing I could do. The pain and fatigue had been so high that I couldn't study much and sitting in the exam, I knew if something did not change, I was most definitely going to fail.. In fact, there was little point in sitting the exam at all. All that was left to do was cry.

Instead, I lifted my eyes to the One who can help & said if you want, please take away a little of this fatigue and pain to pass this exam. If not, I will surely fail. Just a little, please. What did God do? A million times more than that... Where everyone else had let me down, I kid you not, I barely had to wait a minute before he lifted almost 50% of the fatigue for a full half of the exam period. He helped me think; He helped me ignore unimaginable pain levels; He said there by my side, each minute. There were so many questions I hadn't even studied for because my brain fog stopped me from understanding anything but God's bigger than that.. How could tax law stand against its maker and mine, God! If you have fibromyalgia, I know you understand just how I was feeling and the impact of what God did for me. As I walked away, after it was over, my eyes welled up with tears of thankfulness (& pain as it grew each minute)...God said: When everyone fails in the 20% they promise you, I'll do for you 100% more than you can possibly imagine, expect or ask for. 

Truly, I know I said it once before this week already, but - If God is for us, who can stand against us? What can stand against us? Nothing! Not fibro! Not even unfair discrimination / lack of support.. Nothing! 

The world often sucks..... but God is forever good.

Fibro Myth #5: You don't look sick, so you must be feeling better

Just because you can't necessarily see our illness on our faces at first glance does not mean that we are not sick. Our illness may be invisible to you, but we are not. And our suffering certainly is not.

If you are chronically ill and have been so for a year or more, chances are you've heard atleast five people - doctors, friends, colleagues or family - say that you don't look sick. They might say something like, "I can tell by looking at you today that you are well". You've probably felt the sting of comments such as those.. Let me tell you it hurts.

Really, could you imagine saying that to someone who's just been diagnosed with cancer or a tumour? Or to someone who's torn a ligament in their leg? Definitely no!

The only way to stop or prevent these hurtful comments is to spread awareness. We need to tell our friends and family that those comments are hurtful. We need to share about how fibromyalgia works and how we can be in imaginable pain, while still not looking it.

A friend of mine wrote the following, which you might find helpful to share with friends/family:

• You can't see that it is taking every ounce of physical and mental energy to keep it together as my pain levels are overwhelmingly high. You WILL see me concentrating hard, sweating and getting exhausted quickly. 
• You can't see that I am battling migraines. You WILL see me take a sick day, reach for my medications constantly or massage my temples to ease the pain. 
• You can't see me getting lightheaded or dizzy whilst walking on stairs or taking steps. You WILL see me not walking in a straight line, touching my head and looking disorientated. 
• You can't see the pain, bloating and uncomfortableness from my irritable bowel issues. You WILL see me eating less, not enjoying eating and using the toilet often. 
• You can't see that I am in agony/ crisis pain levels. You WILL see me grimace as I carry my laptop, walk slowly and wish for the end of the day to come sooner. 
• You can't see my fatigue. You WILL see me drinking cups of tea, lots of water, taking breaks and holding my head.
• You can't see that I am panicking because the light and noise in the room is giving me sensory overload leading to a migraine. You WILL see me close my eyes, doing a mental calming exercise and not being attentive to everything that is going on around me. 
• You can't see my feelings of isolation or loneliness. You WILL notice that you don't hang out with me as much. 

May 12th has been designated as Fibromyalgia/CFS/ME & Other Invisible Illnesses Awareness Day, in honour of the famous nurse, Florence Nightingale. She was born May 12th 1820. What is not often known, is that she had a long term, debiliating illness, Brucellosis aka Crimean fever, brought on from contaminated wheat or milk, which caused chronic muscular pain. She knew intimately what living with chronic pain was like. Please get along side this day and share with those around you, every chance you get, about life with chronic illness.

For those who may have made these comments to people with chronic illness, let me let you in on a truth: Spend a day with your chronically ill friend & I guarantee you will be shocked at how much pain they have to deal with, amazed that you never saw it before, and bewildered by how your friend manages to do all that he/she does with this kind of daily pain.

Fibro Myth #4: I know the feeling, I get tired too!

Ever heard your family or friends or colleagues scoff when you tell them you're exhausted? Do they say, "yea, me too"? Do you feel like you're a dead man/woman walking?

Source

Unfortunately, for most people, having fibromyalgia also means battling extreme chronic fatigue symptoms. Chronic pain and fatigue often occur together - as many as three in four people with chronic, widespread musculoskeletal pain report having fatigue; and as many as 94 percent of people with chronic fatigue syndromes report muscle pain.

Being fatigued is different from just being tired. According to Dr Karin Olson, a University of Alberta professor (Faculty of Nursing), individuals who are tired still have a fair bit of energy, so although they may feel forgetful, and impatient, and experience gradual heaviness or weakness in muscles following work, this is often alleviated by rest. Fatigue, on the other hand, is characterized by difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, increased sensitivity to light and the limiting of social activities once viewed as important. Individuals with exhaustion report frank confusion that resemble delirium, emotional numbness, sudden loss of energy, difficulty both in staying awake and in sleeping and complete social withdrawal.

Unlike tiredness, long-term use of caffeine and other stimulants are generally avoided or minimised by people experiencing fatigue and exhaustion, as these substances "fool" the body into thinking it has more energy available than it really does.

So as helpful as your friends and family are trying to be with their comments, the fatigue/exhaustion suffered by chronically ill is actually not the same as tiredness. We, too, struggle with tiredness, when we are  extremely busy etc but we struggle with fatigue too, which is by far more sinister than the tiredness.

Support National Pain Week!

To those of you struggling with chronic pain, who know others who do or who just plain believe that chronic pain needs to be addressed by the government, please consider supporting National Pain Week 2012.


Here's some practical things you can do to help:

1. Sign the online petition to the Senate to request them to address and take action on the issue of chronic pain in Australia.

2. Print out a copy of the written petition to the House of Representatives and sign it. Get your colleagues, friends, church members, family etc to sign it. Send it via post to Chronic Pain Australia.

3. If you struggle with chronic pain yourself, then please register on the National Pain Week page and add your face to the 10,000 faces of pain campaign. Show the government that we are not small numbers and that this issue deserves attention.

4. If you do have the energy, make an appointment to see your local MP. Tell him/her about the issue of chronic pain, the pain you feel, its impact on your life and work etc. We need to let the government know that is not a passive issue raised by a few but one that deserves attention as it involves the daily pain of many in our country.

5. Inform Chronic Pain Australia of which MP you've met with and when you discussed chronic pain with them so that they know how many local MPs have heard.

Click here to find out more details about the above.

Even if you can't do all these steps, please do as many as you can. Together, we can make a difference!
Together, we can be heard!