A reflection I am writing as I am 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 laying here with an IV drip going into my hand pumping anaesthetic 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 from this list to explain in more depth:
What Chronic Illness has taught me:
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 and 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!!!
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 the 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.
“Now faith is confidence in what we hope for and assurance about what we do not see.”
Hebrews 11 verse 1
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, but I also danced again too, 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!
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 I’m 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!
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 inabilities) and I just felt like I was a big ball of Fibromyalgia rather than feeling myself anymore. The 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!
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!
For the past decade, I have run an awareness and support group for chronic illness, esp. Fibromyalgia. It is 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
Do you have a chronic illness? Has it taught you the same lessons? I’d love to hear from you in the blog comments at the end of the post or in my Facebook support group…
You can find other blogs on this subject under the menu heading ‘CHRONIC ILLNESS LIFE’ or by clicking on some of the blog titles that interest you below:
- “Fibro-my-what?” Let me explain… All about the health condition FIBROMYALGIA
- ‘Odeon LUXE’ A review of the luxury cinema experience; making watching films more accessible when you have physical ailments
Here is my board on Pinterest for all things CHRONIC ILLNESS to follow:
CLICK HERE to PRINT the 5 Lesson List infographic shown below, as a reminder of hope, wisdom & our strength to overcome!
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👣 Helen's Journey 👣 
I have just stumbled across this blog trying to find some lighthearted jokes about chronic illness. I am 22 years old now, we had always known that I had a weakened immune system since childhood but it started getting worse and progressed really rapidly starting around age 8-9. I do not remember what it feels like to not have some level of some pain, I literally cannot remember that feeling no matter how hard I try. After struggling not knowing what I had for years going to multiple children’s hospitals having everyone say “but your blood work came back normal??” Finally at age 21 one of my doctors finally recommended I go to a neurologist to see if I have nerve damage. With that coming back positive, my mental illnesses diagnosis, and my other symptoms I was officially diagnosed with fibromyalgia. And I still have no idea what to do. I was involved in a motor vehicle accident in August that honestly should have killed me, it was terrible and I still am in shock and have no idea how I came out unscathed. It basically only flared up my existing illness. After that accident I was out of work for over a month trying to recover and then I caught a cold in between that and became even more sick so I was out of work for a while and lost my job. Since then, I have been hired and fired from 3 jobs and it might as well be a script at this point from the employers. I get hired and we discuss reasonable accommodation and im working doing my job as normal, as soon as the business owners see that it isn’t as lucrative for them or as easy for them as they had assumed, because I am taking a bathroom break more than my coworkers or because I’m moving something in such a way so I don’t pull out my back, I take a few minutes to throw up and return back to work like nothing happened, and it looks weird to them, etc. they fire me but claim “oh we care so much about YOU and YOUR health we don’t want YOU to get even more sick working here we care TOO much 😦 so we gotta let you go.” But on the other hand, you know I have been producing the same results and completing all of my work, you know I have 3-5 dr appointments a week for things such as physical therapy, my insurance doesn’t pay for it all it’s still about $50 or more a week, plus my other bills, plus my car insurance went up double because of that accident. Someone sideswiped me on a highway but the police report was not correct included nothing that I had said nor anything from witnesses there were no witness statements despite me seeing the officers interviewing bystanders, and so it was deemed my fault so it was tacked on to my car insurance. They know I have all of these extra payments and struggles because I am chronically ill, but then fire me instead of work with me because it’s easier for them. They don’t want to do their job of business owner the second it gets harder for them or they aren’t equipped to deal with a disability… like maybe ASK the person who has the disability? But no just fire them instead. I am so unsure of what to do because of this. And 2 of the employers who have fired me really said “you can try for disability” as if it’s just that simple. I cannot go on disability because if Social Security know you’re working then you don’t get ANYTHING because it means you can work perfectly fine, so you are forced to not work for 1-3 years while your disability request is being processed, and then after waiting all that time with no income, it can still be denied. If it’s denied and you want to contest, you’d have to pay for an attorney to try to resolve it, and even then they could still say no. So all of that money is coming from where? If you are not allowed to work you have no income so you’re racking up debt for years. And meanwhile this is all going on, you still need money somehow for food, bills, drs appointments (ppl don’t realize how expensive it is to be sick), but if anyone sees you get any money in your bank account for anything, that means you can work and your disability will be denied. Not to mention even if you do get approved it is still not a feasible amount of money to support someone with a disability… all of the medical bills in addition to your regular bills plus the debt you’ve accumulated over the years u couldn’t work. I already have hundreds of dollars almost thousand dollars of medical debt from this illness even WHILE working because of all of the discrimination and set backs. I’d never be able to recover from the amount of debt of not working for even more than a month and I’m just stuck and have no idea what I should do or how to help this.
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