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 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!

making films more assessable for people with physical ailments. review of odeon luxe cinema with leather recliner chairs by Helen's Journey Blog www.helensjourney.com
Making cinema experiences more accessible for people suffering from chronic pain, fatigue and injury.

Sitting in each of the 12 cinema screens is now an audience pleasure, as each individual seat is a soft leather electric recliner chair. The easy to use electric control puts your feet up off the floor and tilts you back to an almost lying down position.

Of course you take your finger off the control when you are in your own desired position. You can leave it as just a normal chair position if you’d prefer & just enjoy it for being a soft, more comfortable chair instead of taking advantage of its recliner feature.

Each seat also comes with an individual tray table with a cup holder in. The tables are adjustable so they can stay at the side of you or you can swivel them around In front of you, over your lap (I image this would be easier with eating something like nachos).

review of odeon luxe cinema with leather recliner chairs and individual table by Helen's Journey Blog www.helensjourney.comreview of odeon luxe cinema with leather recliner chairs and individual table by Helen's Journey Blog www.helensjourney.com making films more assessable for people with physical ailments

Out in the foyer you buy tickets from self-service ticket machines, but there is customer service team reps at the counters for buying your snacks and beverages.

This upgrade also includes a new bar selling wine, beers and spirits. As well as a new menu for hot and cold food that can be taken in with you to watch your film.

The adult standard ticket cost is £12.50 – for me personally it was worth paying the few extra pounds just for the added comfort.

Using luxury cinemas to make watching films more accessible, when you have chronic pain!

As a sufferer of chronic widespread pain & fatigue, going to the cinema to watch a film isn’t something that comes easy as seats aren’t the most comfortable and you are stuck in the same position for a long period of time. However, going to the cinema when you have physical ailments is something that has defiantly become easier with more luxury cinemas being opened.

Fibromyalgia means staying in the same position for a long period of time increases pain, discomfort & overall stiffness when you move again. So being able to move around in the seat and change positions with the chair/raised feet element is really helpful.

This cinema also includes other facilities to make this cinema experience DISABILITY FRIENDLY with:

  • Accessible toilets
  • Wheelchair access to every screen
  • Spaces for wheelchairs and an accompanying seat next to it
  • Headsets with extra amplified sound
  • Infra red enabling Audio Description
  • CEA card initiative, which gives disabled cinema guests a complimentary ticket for someone to go with them. More info at: www.ceacard.co.uk
odeon luxe cinema with leather recliner chairs, making films more assessable for people with physical ailments. review by Helen's Journey Blog www.helensjourney.com
Recliner chair in its fully reclined position

Taking children to an Odeon Luxe cinema:

A more independently exciting experience for children, that gives them a treat in style and luxury!

I’ve now been to my local Odeon Luxe twice. Firstly, I attended with my six-year-old nephew and walking in and seeing the seats he was well excited! Having his own seat and own table must have seemed grown up to him. He definitely saw it as a treat which was perfect as it was his birthday. Under 12 child tickets are £7.50 or family tickets are available.

During the film he was happy to find out that the arm in-between the chairs could be pushed up to huddle together to watch the film. This gives children extra security esp if there is a scene they find scary or they are unsure of. I’m sure the handy arms up trick comes in handy on a few date nights too 😉

review of watching Momma Mia here we go again film in an odeon luxe cinema with leather recliner chairs, by Helen's Journey Blog www.helensjourney.com

Film Review of watching ‘Mamma Mia Here We Go Again’ in an Odeon Luxe Cinema (No Spoilers!)

Then this week I went there to watch ‘Mamma Mia: Here We Go Again’ and sitting in cinema seat luxury definitely made it an even more enjoyable experience, being able to adjust my position as I watched depending on my discomfort levels in that moment.

I’m not into spoilers but I will say the film was great. I loved the ways they fused flashbacks and present action together throughout the film, with smooth transitions between them (making it almost instantly ready to be transformed into a stage show no doubt).

The young actors they got to represent each of the older actors in flashbacks was brilliant casting, as each one was really believable in looks and characteristics.

As a soundtrack I knew more of the Abba songs from the first film’s soundtrack. However, all of the songs used in this sequel fit perfectly for the part of the story they were linking to in song. So although I wouldn’t be able to sing along to many if I brought this films soundtrack album – I totally understand why each individual song was chosen for its part to play in telling the story so fittingly.

However, the film had me feeling like next time I’m on a date, I’ll be disappointed in the guy doesn’t break out into a song for me… 😉😜😂

I’d recommend going to an Odeon Luxe Cinema for a luxury film experience, especially if going to the cinema is usually a hard task for you physically.

Over all I give the Odeon Luxe experience a huge thumbs up & I’d recommend you all go & give your local Odeon Luxe a visit, at least once to tick it off your experiences list! 👍

Wondering what Fibromyalgia is? Then Click HERE to open up a new window to read my post: “Fibro-my-what?” Let me explain… All about the health condition FIBROMYALGIA

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):

Facebook Page / Bloglovin / Instagram / Twitter / Pinterest / YouTube

Facebook: Fibromyalgia Awareness & Chronic Illness Support Group

making films more accessible for people with physical ailments. review of odeon luxe, luxury cinema by Helen's Journey Blog www.helensjourney.com
If you or a loved one suffers from chronic pain then please feel free to join my Facebook group by clicking HERE or by searching on Facebook for: Helen’s FIBROMYALGIA AWARENESS & CHRONIC ILLNESS SUPPORT GROUP
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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. 

For those of you who follow my blog will know, after having the mumps in my final year of university I just couldn’t get my mojo back! I was diagnosed with ‘Post-Viral Fatigue’ which then brought on Chronic Fatigue Syndrome. Then two years later, November 2006 I was debilitated as I had developed the condition ‘Fibromyalgia’ at the then age of 23.

The amount of information about the condition has increased dramatically over this past 11 & a half years (no need to look at the sentence before and do the math and try to work out my current age…yeah I know some of you were going to, as I would too!! haha! – I’ll save you the sum, I’m a blessed 34 now.)

The Consultants physical examination for Fibromyalgia shows pain in all four quadrants of the body. Pain in at least 11 out of 18 identified ‘tender point sites’ being spots of extreme tenderness when they are pressed. (I had 18 out of 18 – literally everything hurt even each finger and toe!) However, this is just testing for the outward signs of extreme pain.

Research has now identified that people with Fibromyalgia have altered amounts of certain chemicals in the nervous system and hormone deficiencies. Specifically the neurotransmitter ‘Substance P’ which is found in spinal fluid and is responsible for transmitting pain signals to the brain. People with Fibromyalgia were found to have three times the amount of Substance P – ultimately sending three times the amount of pain messages to the brain. The effect of this is ‘disordered sensory processing’ basically the brain registers pain when others might just experience a slight ache or stiffness.

Over the past decade, all over the world there has been an increasing amount of research like this that has gone into the condition. From this, advancements in how it can be detected and treated have happened (although a longed for cure isn’t given.)

what is fibromyalgia - helens fibromyalgia awareness support group on facebook

Just how do official health bodies describe Fibromyalgia?

Here is an official explanation of the condition and then I will talk about it in my own words as a sufferer:

“The exact cause of Fibromyalgia is unknown, but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

The central nervous system (brain, spinal cord and nerves) transmits information all over your body through a network of specialised cells. Changes in the way this system works may explain why Fibromyalgia results in constant feelings of, and extreme sensitivity to, pain.

It’s also suggested that some people are more likely to develop Fibromyalgia because of genes inherited from their parents.

In many cases, the condition appears to be triggered by trauma or a physically or emotionally stressful event, such as: an injury or infection / giving birth / having an operation / the breakdown of a relationship / the death of a loved one, etc.”

NHS National Health Service UK

Explaining Fibromyalgia from a sufferers point of view:

You know that hangover feeling you have the next morning after a long night out on the town drinking way more than you should have? Well imagine having that hangover, the body stiffness, muscle aching and that run over feeling, constantly everyday from the minute you wake up! That’s what people with severe Fibromyalgia have to deal with 24/7.

People with Fibromyalgia have overactive nerve endings. More of their nerves are ‘switched on’ and are over sensitive – so stimuli that wouldn’t usually cause the body a problem, can cause the person to feel pain and discomfort. This can feel like widespread pain / burning sensations / throbbing / stiffness / aching muscles / muscle spasms.

7 types of fibromyalgia pain - helens fibromyalgia awareness support group on facebook

Unbalanced levels of chemicals in the brain and nervous system also result in hypersensitivity, pain messages to the brain being amplified and ‘sensory overload’ from surrounding stimuli such as light, sound, touch and other environmental factors.

Hormone imbalances play a significant role too:

  • Melatonin plays a role with the sleep issues
  • Serotonin affects our circadian rhythm, it’s needed for deep sleep and its deficiency linked to major depression.
  • Cortisol as too much of this stress hormone can put our bodies into a constant state of ‘flight or fight’ mode from chronic stress. also plays a role in adrenal fatigue, reducing inflammation, blood sugar levels etc.

An in-depth scientific research paper to read for more information is: Dysfunctional Neurotransmitter Systems in Fibromyalgia (click on name of article to open it in a separate tab)

Debilitating fatigue and Sleep Disorders also play a big role in the syndrome, both causing cognitive difficulties (trouble concentrating or thinking of words – also known as ‘Fibro Fog’ or ‘Brain Fog’), headaches / migraines and sleep deprivation.

These symptoms can increase if you stay in one position for too long when sitting, standing or esp after sleeping. Common activities that cause problems for sufferers are things you may find easy such as dressing, showering, washing up, drying your hair, sitting at your desk at work, vacuuming, walking short or long distances, stairs, carrying shopping bags, the list goes on…

I took normal things for granted before i got chronically ill. Helen's fibromyalgia support group on facebook
Remember to read my other blog post “5 life lessons from chronic illness. What over a decade with Fibromyalgia has taught me” (Click on the blog title to open this post in another window)

These everyday activities suddenly feel like mountains to climb and marathons to run. They can leave you exhausted and send so many pain signals to your brain that the pain is escalated into what we call a ‘Fibro Flare’ and many become bed bound for a period of time.

The severity of the pain can vary daily usually depending on how much you do physically, as pain seems to get worse after physical exertion. Symptoms can change location in muscles all over the body frequently, depending on which muscles you use during daily activities.

Here are some Aggravating factors that can all contribute to symptom flare-ups.:

  • Changes in weather
  • cold or draughty environments
  • hormonal fluctuations (premenstrual and menopausal states)
  • stress
  • depression & anxiety
  • over-exertion
  • emotional trauma or reacting to unexpected life events
  • diet and vitamin deficiencies
  • toxic overload and chemical sensitivities etc.

living with fibromyalgia. helens fibromyalgia awareness support group on facebook

How is Fibromyalgia treated?

I was told when diagnosed that most patients can expect to have this problem lifelong yet in some cases it can go away for good or flare up again at different times in life.

However, I’m proof that worthwhile improvements can be obtained with appropriate treatment such as pain medication, physiotherapy, hydrotherapy, acupuncture, relaxation techniques, sleep improvement, massage, exercise, heat/cold therapy, rest, pacing, reducing stress, supplements, psychological support, a healthy and balanced diet, etc. A gentle and suitable, regular exercise routine is advised although painful, to help with trying to maintain muscle strength and movement.

As well as deterioration which I’ve experienced, the condition can also improve overtime too as I’ve also experienced in the last couple of years. This is with appropriate treatment as well as medical advise; meaning you can increase your daily activities and become more active in life, it is possible for some. However, you need to pace yourself, keep up with your prescribed exercise routines, medication and other treatments that make up your own care plan.

“The goal is to live life in spite of fibromyalgia rather than having no life because of it. Take each day as it comes & make the most of it together with your loved ones.”

~ Quoting Helen’s Journey

Sadly, common painkillers you’d usually use to combat pain are generally ineffective against Fibromyalgia pain. However, there are tablets that doctors can prescribe to try to help, which may work differently in individual cases – such as tablets that try to block the pain signals to the brain or a form of morphine, etc. Medication is more commonly prescribed to help with the symptoms not the cause though, such as medication to address the sleep disturbances caused by Fibromyalgia; this can then help with fatigue levels, resulting in altering pain levels. It is one big ongoing cycle as the cause is still present.

Fibromyalgia is a complex condition with a number of other conditions that can occur along side it, making it very complicated to treat. Exactly what works for one person may not be the best treatment for another, as we all have different levels of brain chemicals inside us to make reactions to treatment more personalised in each case (and why some prescribed painkillers or pain signal blockers work differently for each person.)

Gut health also plays a huge role in our health – after all 80% of our immune system is stored in our gut!

In my opinion the best treatment for Fibromyalgia is through a multidisciplinary approach, using medications, complementary and supportive therapies, and lifestyle adaptations. It is rare that one approach alone can manage Fibromyalgia in the best way possible. It isn’t just about physical health it is also about mind health, emotional health and gut health – as we are all three; mind, body and spirit.

REMEMBER: Just because one treatment doesn’t work for an individual Fibromyalgia patient, it doesn’t mean that there isn’t something else that will.

Alternative therapies also need to address our mind health such as breathing exercises and relaxation techniques to address muscle tension, stress and anxiety levels. Emotional help like speaking to a counselor or joining a support group can help also – I have set up my own support group on Facebook where I post supportive photos, interesting web links, etc (Facebook search: Helen’s FIBROMYALGIA AWARENESS GROUP)

Helen's Fibromyalgia Awareness and Support Group on facebook for chronic illness sufferers
Find my support group on Facebook, its positive, uplifting and encouraging! Click to join: www.facebook.com/groups/HellsFibromyalgia/

How can Support Groups help people deal with Chronic Illness?

As I was diagnosed with the condition myself as a young adult, I felt it important to raise awareness especially for other young ladies who found themselves in the same boat as me. Although men can be affected too, about 9 out of 10 cases of Fibromyalgia are in WOMEN!

This is why 11 years ago after being diagnosed & not finding much support was available to me, I set up a support group on the social media platform Facebook. My group named ‘Helens FIBROMYALGIA AWARENESS GROUP (also relevant 4 other chronic illness)’ now has 543 worldwide members (and hopefully a few more people will join after reading this article… just click on the group name for it to open in a new window)

THE IMPACT OF CHRONIC ILLNESS ON LOVED ONES OF THE SUFFERER:

Because of its debilitating nature, Fibromyalgia has a large impact on everyone connected with a sufferer, from family and friends to employers. Family & friends etc, can help you live with fibromyalgia by learning as much as possible about the condition and then can show an understanding. This is why loved ones of sufferers are members of my support group not just sufferers themselves, as they need support and advice too.

Fibromyalgia may be invisible – but I’m not!

Fibromyalgia is also known as a ‘INVISIBLE ILLNESS’ as looking at someone with it, you would not necessarily see their suffering or realise they had painful muscles underneath their clothes & over sensitive nerves running throughout their body! That’s why awareness & having an open discussion like this is so important; there may be many people out there with this condition who are suffering alone, in silence, who may just need some advice, information, or encouragement to seek medical help.

“But you look fine”

To others you may look fine and as too many of you I look like a normal, happy person or just smiley Hel’s in my Instagram pictures ;-). However although you have better days when you can do more activities – you then have the bad days recovering & paying for doing normal things that those people don’t see! You know those sayings “Don’t judge a book by its cover” and “don’t judge what you don’t know” and “if you don’t know then get to know”…they all spring to mind!

I encourage you to go and read the poem I wrote all about unfair judgement: “Never judge a book by its cover” (click on poem name to open it in a new window)

Not every pain is as clear as a broken arm in a cast – awareness of invisible conditions is needed so badly! Just look at how some people go mad at someone using a disabled parking bay if they aren’t in a chair or have a stick! Disabilities aren’t that simple!

However, to be honest you do get used to the pain & trying to push through daily life & when normal activities such as going out for a friend’s birthday comes up, you have to limit activity beforehand and plan out pain relief just so you can go. Yet, you go knowing that you will suffer and pay for it afterwards in pain and discomfort!

It’s because of my personality (& my Christian faith also) that I feel I am now able to try to put on a happier face & try to live life again the best I can (although it’s far from the norm) rather than just being a big ball of pain not taking part in life – like I did at my lowest point after diagnosis. It was a dark, dark, time of depression and debilitation that had me give up on life – but I’ve worked so hard to not go back to that place.

Watch me talk about my experience in this video as I’m interviewed for a project called ‘I AM WARRIOR… MY STORY’ by the company Life Balance Arts. Click here for the Full video via Facebook: HELEN’S JOURNEY READS HER SPOKEN WORD ON BEING A CHRONIC ILLNESS WARRIOR & SHARES HER STORY

Or for a clip of me reading my spoken word piece on being a chronic illness warrior, click HERE!

i have an invisible illness yet i smile. helens fibromyalgia awareness support group on facebook

Fibromyalgia – The invisible condition that you or someone you know may be suffering from and need to seek help for!

Personally, as a suffer myself, my piece of advice would be to seek help and medical advice. Some GP’s may not be fully informed about Fibromyalgia so ask to be referred to a pain clinic at your local hospital to see a Consultant and for treatments, a Rheumatologist or Physiotherapist.

If you aren’t happy with treatment you are getting or the GP won’t refer you then contact places for advice (in England that will be PALS – Patient Advice and Liaison Service) Even if you only do one thing after reading this article, ring a help line or look at listed websites for more information…

UK:

USA:

Articles & Groups:

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):

Facebook Page / Bloglovin Instagram / Twitter / Pinterest / YouTube

Facebook: Fibromyalgia Awareness & Chronic Illness Support Group

sufferer statement by Helen's journey on Fibromyalgia Awareness Day

Fibro-My-What a blog post all about the health condition fibromyalgia by facebook chronic illness support group leader Helen's Journey

Posted in ALL BLOGS, Chronic Illness, LIFE

3 day Quote Challenge – Day 1 of sharing a quote I love & why I chose it

3 Day Quote Challenge:

Day 1 of sharing a quote I love and why I chose it

I love a challenge, so being nominated to do a ‘3 Day Quote Challenge’ when each day you choose a quote to share and explain your reasons for choosing it – of course I accepted!

Thank you to Shannon from the blog MSnubutterflies for nominating me for this challenge!

Here is my quote for Day 1:

helens journey quote about appreciating the small things in life you can do, not big things you cant do.
I questioned if choosing a quote from myself was vain, but considering I’m used to putting myself in the limelight, I thought I’d go for it! 😉

 

This is actually a quote from my blog post “WHAT I’VE LEARNT FROM OVER A DECADE WITH CHRONIC ILLNESS! TOP 5 LIFE LESSONS FIBROMYALGIA HAS TAUGHT ME…” (Click on blog title to open the post in a new window)

I love this quote as it’s through changing my focus from what I can’t do due to health conditions, to focusing on what I can still do – that helped me find a more positive outlook, a re-tuned perspective and an appreciation for the small things in life!

I hope to you, whether you have a chronic illness or other limiting factors in life or not, it really is a reminder of life being what you make it no matter what hand your dealt.

It also brings to mind the quote “When life gives you lemonsmake lemonade” or is that cheating throwing another quote into the mix? Always the rebel hey 😉

Each day I’m going to be nominating 3 others to join in with the Quote Challenge fun. So Day 1 I nominate:

The lovely Sophie from Something So True

Wendy over at My Organic Life Journey

Rebbecca from Becks In The City

The Rules:

  • Thank the person who nominated you & link to their blog.
  • Post a quote for three consecutive days (1 quote for each day).
  • Share why this quote appeals so much to you.
  • Nominate 3 different bloggers for each day.

So there you have it my quote for Day 1 of the ‘3 Day Quote Challenge’  – don’t forget to read the other 2 😉

Click here to read Day 2’s quote & reason: Day 2

Click here to read Day 3’s quote & reason: Day 3

Have fun everyone, reading and sharing quotes 👌👍☺✍

Signing off; ~ Helen ~

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):

Bloglovin Google+ / Instagram / Twitter / Pinterest / Path

Facebook: Fibromyalgia Awareness & Chronic Illness Support Group

helens journey quote about appreciating the small things in life you can do, not big things you cant do. day 1 of 3 day quote challenge

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

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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!