Posted in ALL BLOGS, Chronic Illness, Travel & Days Out

‘Odeon LUXE’ A review of the luxury cinema experience; making watching films more accessible when you have physical ailments

ODEON LUXE – watching your films in a more luxurious way!

My local Odeon Cinema (Regal Cinemas in the USA) was out of action for a while as it underwent a refurbishment, but this wasn’t any old refurbishment with a new carpet and a dash of fresh paint. No, I’d call it more of a luxury makeover! You see it didn’t just get a new word in its name – it got a new identity. The ‘LUXE’ really is visible to see!

Continue reading “‘Odeon LUXE’ A review of the luxury cinema experience; making watching films more accessible when you have physical ailments”

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Posted in ALL BLOGS, Chronic Illness

“Fibro-my-what?” Let me explain… All about the health condition FIBROMYALGIA

Fibro-My-What?

Let me explain…

The 12th of May is ‘Fibromyalgia Awareness Day’ – So what better way to become aware, than by reading this blog post!

You write it: FIBROMYALGIA

You say it: Fi – bro – my – al – gee – ah.

The origins of the word:

“fibro”for fibrous tissues such as tendons & ligaments

“my”indicating muscles

“algia” meaning pain.

Also referred to as:   FMS (Fibromyalgia Syndrome)

“Fibromyalgia is a chronic condition of widespread muscle pain, profound fatigue & sleep disorder, along with many other symptoms.”

www.fibromyalgia-associationuk.org

According to the National Fibromyalgia Association3-6% of the world’s population has Fibromyalgia syndrome. 

Continue reading ““Fibro-my-what?” Let me explain… All about the health condition FIBROMYALGIA”

Posted in ALL BLOGS, Chronic Illness

What I’ve Learnt from over a Decade with Chronic Illness! Top 5 Life Lessons Fibromyalgia has taught me;

Life Lessons from Chronic Illness: what Fibromyalgia, Chronic Fatigue Syndrome & other conditions have taught me…

A reflection as I’m undergoing treatment!

As I type this, I’m currently on a hospital bed receiving treatment for the chronic illness I’ve had for just over 11 years. As I am lay here with an IV drip going into my hand pumping anesthetic around my body to try to numb my nervous system down, I find myself reflecting on the life lessons chronic illness has brought along with it…

  • You never know what’s around the corner.
  • You find out who is willing to make the effort for you, when you are simply unable to do it back.
  • There is a big difference between being alive and actually living.
  • Life comes down to love.
  • There is always a way to do it or an alternative.
  • You find out what your passion is when you can’t do it any longer.
  • You discover your core relationships.
  • The power of the mind and destructive thinking.
  • The danger of owning your diagnoses.

I could really let my fingers carry on and list a thousand things, esp as I’m on this IV drip for a few hours…but I’ll only pick a few to explain in more depth:

What Chronic Illness has taught me:

you never know whats around the corner: no1 life lessons of chronic illness infographic Helen's journey blog www.helensjourney.com with web address for Helen's Fibromyalgia Awareness Facebook Group

1. YOU NEVER KNOW WHAT’S AROUND THE CORNER!

Literally I was 23 years old, working full-time (and overtime), busy social life going out with friends and active (I loved to go out & dance that was my thing!). Two months before I got Fibromyalgia I climbed Snowdon, which is the highest mountain in Wales and the highest point in the British Isles outside the Scottish Highlands. I climbed each and every single 1,085 metres above sea level!

Yet two months after standing victorious on top of that mountain, I was sent home from work as a pain in my lower back was spreading up my back and then swelling the red, boiling hot muscles up my back.

During that first week I was taken into ‘Accident & Emergency Department’ twice, put on 8 different medications & the Fibromyalgia spread to every muscle in my body, even my heart was affected and needed ECG tests. At 23 It was a surreal experience to suddenly be unable to move, walk, sleep or do anything. I was spoon fed like a baby, it was what we all thought was the end for me.

Two nights before getting Fibromyalgia I was out with my best friend in a nightclub dancing away (I love/d to dance!) and days later I couldn’t even walk I was being carried! YOU LITERALLY NEVER KNOW WHAT’S AROUND THE CORNER!!!

no2 life lessons of chronic illness infographic Helen's Journey blog www.helensjourney.com with web link to Helen's Fibromyalgia Awareness Facebook Group

2. THE POWER OF HOPE & THE NEED TO FIND JOY IN THE SMALL THINGS!

At a time when I was so debilitated I only left the house for medical appointments, I could hardly move or walk. I took meds to eventually knock me out, then woke up with the worst Fibromyalgia & Chronic Fatigue hangover with symptoms mixed in with medications and their side effects.

I was in a deep isolating depression. I lived out of my bedroom & never opened my curtains. I thought what’s the point in seeing the outside world when I don’t feel able to be part of it. I mourned my life I used to have out there.

It was surreal, how could I be 24 & have the ability of an old age pensioner (ok sorry Mom if you’re reading this as you are a pensioner now, but I mean old, old! Like my Grandad Mac old – living till he was 99 and 2 months old!)

What changed it for me… I started to see the little ray of hope amongst all the darkness… That hopeful light to some, may be the ray of sunshine their children bring them, or being cared for by a loved one and receiving love that brings hope to your situation. For me? It was my faith that in a way, forced me to have a slither of hope.

Hebrews 11 verse 1 “Now faith is confidence in what we hope for and assurance about what we do not see.”

As to have faith in God, is to have hope. You believe in miracles, in God’s promises, in God’s ability to change things and bring good out of the bad you’re experiencing. To keep speaking God’s promises over myself – all of these things were making me keep believing and keep on hoping.

And my God thank goodness I did – as better days have surely come!! Not only did I walk again, I danced again, I’ve been on holidays, I’ve loved, I’ve laughed and I got my joy  back!

“You HAVE TO find JOY in the little things in life, instead of mourning the big things that you can no longer do.” – Helen’s Journey

When I looked at all I couldn’t do, it felt hopeless & quite frankly I didn’t see the point in being alive just to live in that present non-existent state. But when I looked at what I did have, a loving family, supportive best friend, a handful of friends who cared for me and visited during the first horrendous part of life with Fibromyalgia.

I lost my full-time job, I had to move out of my house as I couldn’t afford it anymore & it was no longer suitable for me with the steep staircase, bath, etc. I felt like all I had worked so hard for was being taken away from me. It felt like I just had to lay there and let this horrible condition just take over my life and push me out of my body.

NO! Don’t let all the bad or stressful or unfair things take away your hope or your ability to see joy. Instead, I had to change my perspective to look at positives rather than the negatives. I don’t say it like it’s an easy thing to do, as believe me retraining my brain and my thoughts was HARD WORK and SELF DISCIPLINED! But oh so worth the effort to see life’s silver linings and not just the storm clouds!

no3 life lessons of chronic illness infographic Helen's Journey blog www.helensjourney.com with link to Helen's Fibromyalgia Awareness Group on Facebook

3. THERE IS A BIG DIFFERENCE, BETWEEN BEING ALIVE AND ACTUALLY LIVING!

There is a difference between being classed as alive simply because you are breathing and your heart is still beating, and then actually feeling alive because you are actually living life.

One day I remember saying to my family that I don’t feel alive, I hardly feel like im even here, I feel like a zombie, I feel so zoned and out of it. That was when, with the support of my family & best friend, I went through my first withdrawal experience off a medication my body was addicted to (but that full story is for another blog).

Thank the Lord I came off it! Afterwards, although still suffering from the pain and all the mental issues chronic illness brings with it, my soul came back to me, I actually felt present in the moment and felt I was actually alive again!

As my mom put it “You have your sparkle back in your eyes, they looked so dull before!”  If you see how bright my blue eyes are you will understand the impact of those bright eyes looking so dull and soulless. As that is how I felt, soulless! Like my soul had left. I’m eternally grateful to have it back & I’m determined to not let go like that ever again!

no4 life lessons of chronic illness infographic Helen's Journey blog www.helensjourney.com with web link to Helen's Fibromyalgia Awareness Group on Facebook

4. THE DANGER OF OWNING YOUR DIAGNOSES!

I’ve lived saying “MY Fibromyalgia” like it was mine, I owned it and it was ME, like that’s who I was now as pain was my life.

Then I changed to purposely not saying “MY” Fibromyalgia and saying “THE” Fibromyalgia, instead.

This came about as my mom kept advising me from a spiritual perspective of being mindful of what I speak over myself and my life. To basically “Stop owning Fibromyalgia like it is yours. You don’t want it, so stop owning it!”

At first my back went up because Fibromyalgia had consumed my body, my mind and my abilities (well in abilities) and I just felt like I was a big ball of Fibromyalgia rather than feeling myself anymore. Pain was my normal, chronic illness was my life, trying to survive was my full-time job. I felt like I don’t have a choice, it’s mine as It’s who I am now – so why wouldn’t i say “MY”!

Yet after my defences went down, I researched, asked for more advise and spoke about this concept more. Ultimately, I realised more and more I do have a choice over what I say even if I don’t have a choice in being ill or not.

My Mom was right (well aren’t they always even if we refuse to agree for a while lol) the Bible speaks of what we speak out into the atmosphere having an effect on our lives. That what we speak over ourselves can come to pass and we can also speak things into existence. The Bible is clear about the power in the tongue for these reasons. I basically took my power back.

Even if you aren’t Christian these are beliefs held in the modern world of; speaking things into existence, the power of speaking affirming words out loud about yourself, manifesting etc.

I chose not to own Fibromyalgia as mine but simply what was happening to me, not what I was owning or claiming as mine. I’m glad I did, as now the Fibromyalgia and me as myself, are so separated now. I can now still feel like myself inside, even when my body isn’t facilitating all my soul longs to do. That is a liberating state of being!

no5 life lessons of chronic illness infographic Helen's Journey blog www.helensjourney.com with web link to Helen's Fibromyalgia Awareness Group on Facebook

5. YOU FIND OUT WHO IS WILLING TO STILL MAKE THE EFFORT FOR YOU WHEN YOU’RE SIMPLY UNABLE TO DO IT BACK!

When your ability to contact people, go places, or meet people, is taken away, you then find out who is willing to contact you, come to see you where you are and contact others to find out how you are when they can’t contact you directly.

Thankfully I did have people who did the above, whom I’ll always be grateful for even if we are no longer close or don’t see each other anymore! That is because they gave me a glimpse of the outside world that I knew was still out there, but that I felt excluded from. They helped me feel connected to it for short moments of time when I saw them or had messages from them. My family & best friend literally carried me through

What over a decade of Fibromyalgia has taught me:

These 5 life lessons taught me that wise, clear and good lessons are able to come out of life’s bad situations including Chronic Illness! Stay strong mighty chronic pain warriors, Spoonies and fellow Fibromyalgia fighters!

CLICK HERE to PRINT the 5 Lesson List infographic as a reminder of hope, wisdom & our strength to overcome!

Join in the conversation in our facebook group. search - HELEN'S FIBROMYALGIA AWARENESS & CHRONIC ILLNESS SUPPORT GROUP
Join in the conversation in our Facebook group. search – HELEN’S FIBROMYALGIA AWARENESS & CHRONIC ILLNESS SUPPORT GROUP

Do you have a chronic illness? Has it taught you the same lessons? I’d love to hear from you in the comments below or in my support group…

For the past decade I have run an awareness and support group for chronic illness , esp. Fibromyalgia. a safe place for sufferers and loved ones of sufferers to talk, confide, advise and encourage each other. It’s a joy to watch! (there I go finding those pieces of joy again! haha)

Please click HERE to take you to my Facebook support group mentioned above or search on Facebook for: Helen’s FIBROMYALGIA AWARENESS & CHRONIC ILLNESS SUPPORT GROUP

You can find other blogs on this subject under the menu heading ‘CHRONIC ILLNESS’ or by clicking on the blog titles that interest you below:

  1. “Fibro-my-what?” Let me explain… All about the health condition FIBROMYALGIA
  2. ‘Odeon LUXE’ A review of the luxury cinema experience; making watching films more accessible when you have physical ailments

Enjoy reading my posts and poems? Then don’t miss out when new stuff is posted –Please click here to join my Email Mailing List to receive an email notification when a new blog is posted!

Why not come & follow my blogging footsteps on other Social Media Platforms (click on names to take you to the different media profiles):

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Facebook: Fibromyalgia Awareness & Chronic Illness Support Group

5 life lessons of chronic illness and what over a decade of Fibromyalgia has taught me! infographic by Helen's Journey blog www.helensjourney.com and weblink to Helen's Fibromyalgia Awareness Group on Facebook
CLICK HERE to PRINT the 5 Lesson List infographic as a reminder of hope, wisdom & our strength to overcome!
Posted in ALL BLOGS, CHRISTMAS

“Trying to stay STABLE, while we celebrate the Stable!” Day 6 of 12 Days of CHRISTMAS REFLECTIONS with HELEN’S JOURNEY 

So todays countdown is 7 days until we wake up and it’s December 25th. For some the excitement of the season mounts as the days get closer, but for others it’s a real strain knowing they have less days than yesterday to complete everything.

However it makes you feel, I invite you to join me each of the 12 days till Christmas, as I share daily Christmas Reflections and of course an accompanying Christmas image! (I just love taking photos & sharing pictures lol)

Todays chosen image below is of a nativity scene, complete with stable but no star 😉

PhotoGrid_1513608544224

Some of you may have noticed, that there wasn’t a post yesterday for day 5 of the Christmas Countdown posts, that’s because I had a bad Fibromyalgia flare (the chronic health condition I suffer with) and my body just said “NO!”

Now I could be hard on myself, make me feel like a let down and a failure as I wasn’t able to stick to the commitment I made etc. Now this is always a battle, as inside I’m still the same girl as before Fibromyalgia restricted me physically and my character is very driven, determined and committed to getting what I want or achieving goals I’ve set myself. However, physically, my body doesn’t give me the privilege of being that girl anymore, it doesn’t care what I want or what goal I had set myself, if it can’t manage it at that moment then my body isn’t doing it and if I try to do it then the punishment is 1000 times worse.

I’ve struggled with pacing as the girl inside me doesn’t want to listen to my body, pay attention to pain levels or have restrictions. Yet at certain times you have no choice – yesterday was 1 of those days!

So instead of stressing I decided to try to stay stable. No not the stable in the picture, that was just me enjoying doing a play on words for ya’ll 😉

STABLE =

  • (of an object or structure) not likely to give way or overturn; firmly fixed.
  • (of a person) sane and sensible; not easily upset or disturbed

I always think of things both mentally and physically, as I know too well what its like being restricted or affected beyond your control in both aspects of life. So looking at the description above of what stable means, I see the act of ‘staying stable’ as being both in body and mind.

The definition for structure being relevant for body – so trying my hardest not to let situations overturn me or cause me to give way, but to stay firmly fixed.

The definition for person being relevant for mind – so not letting things (like not being able to do day 5 of this writing challenge) upset me or disturb my balance but instead try to stay sane and also sensible.

This is so poignant for this time of year. It’s so easy to be so stressed, stretched and overloaded that we become unstable, when small things can cause us to become disturbed and overturn us. We cause people in our lives to walk on egg shells around us, scared of saying or doing something to tip us over the edge and unhinge us. That’s how much stability affects those around us as well as ourselves internally and physically.

So instead of choosing stress, anger or guilt from not doing a post yesterday, I accepted the disappointment. I chose to look at it from another perspective. I tried to focus on what I could do the next day instead of what I was unable to do. I read lovely comments people had made about my days 1 – 4 posts and it gave me smiles instead of frowns.

So when the roast potatoes burn, take lots of deep breaths, accept the disappointment & be glad you have mashed potatoes done. When the Mother-In-Law isn’t that impressed with her present, smile through gritted teeth and don’t let it take your stability away.

So todays reflection is a reminder from this – that in those times we have a choice = stress or stability. I hope this Christmas Season you choose STABILITY too.

Please join me tomorrow for Day 7 of 12 Days of CHRISTMAS REFLECTIONS

Dont worry if you missed earlier reflections as you can click on them below to have a quick read of them: 

Day 1: “DON’T GET YOUR TINSEL IN A TANGLE

Day 2: “PRESENCE over PRESENTS

Day 3: “LIFE is FRAGILE like a Christmas Ornament”

Day 4: “Even Sand can STAND, when it is designed to fall!”

Each days chosen Christmas picture will also be shared on my INSTAGRAM  and my PINTEREST accounts too, so click the links and keep up to date with my Christmas Picture CHEER 😉