5 life lessons of chronic illness and what over a decade of Fibromyalgia has taught me by Helen's Journey blog www.helensjourney.com

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 your hope or your ability to see joy away. 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 DISCIPLINE! 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 infographic as a reminder of hope, wisdom & our strength to overcome!

Do you have a chronic illness? Has it taught you the same lessons? I’d love to hear from you…

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 🙂

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

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42 thoughts on “What I’ve Learnt from over a Decade with Chronic Illness! Top 5 Life Lessons Fibromyalgia has taught me…

  1. Positively Alyssa says:

    This was an amazing post Helen and I want to thank you so much for sharing this! It can be so difficult living with a Chronic illness sometimes, but you hit the nail on the head with everything! I have been living with Multiple Sclerosis for almost 18 years and I feel I never know what is around the corner. I think all of these illnesses have their ups and downs and we never really know what to expect next! Your insights are so incredible and I am really looking forward to reading more of your posts. I love getting to know people on this blog and have so many positive and inspirational people that understand what life is really like with an illness! I hope the rest of your weekend goes well and I hope you are feeling well today! Sending you love and comfort!!!

    Liked by 1 person

  2. LiveNotExist says:

    Amazing post❤️ it’s so nice and uplifting to read how you have managed to pick yourself up after all you’ve been trough!!! I have many diagnoses and also my doctor want to check me for fibromyalgia . Like you write I stoped calling it my sickness… it’s something I have and not who I am.. been sick since I was a child and now I’m working on living and not existing 💙

    Like

  3. katelon says:

    Great post. I’m glad you’ve shifted your perspective and are back to living your life!

    I grew up with severe asthma, since age 2, in and out of hospitals, emergency rooms, doctor appts, home stays. I died a couple times and sat in school holding my breath so no one would hear me wheeze, wired to the max on the asthma meds. Through sitting up for days, struggling to breathe, I learned patience. Through not knowing if I’d be alive the next day, I learned to not take things for granted. I also had several injuries, horrible periods, digestive issues and depression off and on.

    But all of it led me to alternative healing for myself and a career in holistic and spiritual healing. It strengthened my spirituality.

    I believe we are heading to a huge shift into the light on this planet, which will end all the poisoning of our air/water/food/soil, reveal amazing healing substances and methods, and shut down big pharma. So I believe there is hope for us all.

    Liked by 1 person

    • Helen's Journey says:

      Thank you for sharing. Ill health definatley brings along with it many lessons & altered perspectives. Big pharma, chemicals on our foods & in air etc – all things that keep us ill i believe they definatley play a big part. I agree, as what’s done in the dark will eventually come to light…

      Liked by 1 person

  4. gracefulglamouruk says:

    Wow! This was amazing to read, and thank you so much for sharing. I was diagnosed with Crohns Disease back in 2007, but have bren suffering for years before my additional diagnosis of Fibromyalgia in October 2016. Because the symptoms can be fairly similar, it was very difficult to get diagnosed, but I was very fortunate that my rheumatologist wad so knowledgeable.
    I would be very interested to know about how you came off of one of your medications as I am now on so much. It’s so great to find someone who understands xx

    Liked by 1 person

    • Helen's Journey says:

      so glad you enjoyed the read and the encouragement of reading what you can personally identify with because of your own medical journey with chronic illnesses. ❤

      Yes I really should do a post about medications, as I've tried so many different ones and come off ones my body was addicted to as well. it's hard in regard to withdrawal symptoms but at the moment as im reduced off pregabalin im having IV anaesthetic infusions to help as I withdraw.

      very glad our paths have crossed 🙂

      Like

      • gracefulglamouruk says:

        Yes me too, it’s good to know others experience, especially as you’ve been on the journey longer than I have.
        I’m on Gapapentin which as I’m sure you know is similar to Pregablin and I don’t know how I’d cope without it. I’ve been on Tramadol since 2007, morphine for the last couple of years and also citalopram sertralin, and temazapam. Quite a cocktail! I remember it being hard to cope with the side effects of the Gabapentin, so very nervous about trying to come off of it xx

        Liked by 1 person

        • Helen's Journey says:

          yeah they really do put you on a cocktail and then its hard to know what is from the conditions and what is from the side effects as so many of the side effects are things the conditions have and so they make them worse while helping pain. its a tough cycle!

          There are lots of groups on facebook actually supporting you as you come off pregabalin & the gabapentin too. lots of people in same boat, sharing the knowledge they have off medical staff and also personal experiences and tips for reducing and coming off them etc. I will share the information in my facebook group this week for everyone x

          Liked by 1 person

  5. arthritisfighterleann says:

    I enjoyed reading this post & your positive outlook came through. Really greats advice in this & I can totally relate to it. Life with a chronic illness is difficult & I like how you mention there are alternative ways of doing things. So many times at rock bottom I’ve also isolated myself & stopped doing what I love but now know there is always a way forward.

    Liked by 1 person

    • Helen's Journey says:

      Thank you for sharing. Totally agree with you, and its only by us experiencing those lows of not doing anything that we push ourselves to do something once again ❤

      A true meaning of the word warriors! what mighty endurers we are!
      So glad my words resonated with you and you enjoyed reading the post 🙂

      Please also feel free to join my chronic illness support group on facebook. Search 'HELEN'S FIBROMYALGIA AWARENESS GROUP' http://www.facebook.com/groups/HellsFibromyalgia/

      Liked by 1 person

  6. Margaret Langan says:

    Hi Helen. Thanks so much for putting this out here. And for using your limited energy to do it. I’ve had chronic pain (chronic migraine & hemicrania continua) for 18 yrs and finally diagnosed with POTS and MCAS in the past 18 months. I made it through med school, residency, and practiced for about 5 yrs before everything ran me into the ground. Then when I had my daughter 4 yrs ago my health got worse. I spent almost 2 yrs barely awake, couldn’t drive for 10 months, don’t remember huge chunks of time very clearly. You’re so right about all of this. And it’s so nice to hear that other people get it because I don’t think anyone close to me except my husband gets how hard every day is. My blog is an effort to get back into the world, and I’m really glad I found your blog in doing so. Hugs and wishes for a better day tomorrow. 💕

    Liked by 1 person

    • Helen's Journey says:

      Hi Margaret, thanks so much for your comment & sharing your story. There is something so empowering about sharing & finding others that understand.

      so glad you set up your blog & are determined to get out into the world once again through it. Strong, determined and focussed!

      So glad we have connected blog to blog & I look forward to us both reaching out into hte world through our blogs.
      a display of strong women on this International Women’s Day 2018!!

      Liked by 1 person

    • Helen's Journey says:

      Hi Hannah, thanks for the comment & support. Glad to share my story for sufferers & non-sufferers too. I’m sending positive thoughts for your mom.

      If shes on facebook please direct her to my support group, its good to have others in the same boat along the tiring road she is on.

      Also for yourself it’s an open invite as we have sufferers loved ones in the group too for understanding and awareness also. x

      http://www.facebook.com/groups/Hellsfibromyalgia/

      Like

  7. Kristin says:

    This is a truly inspiring story. It makes my heart so warm that you are one of the people with this illness who doesn’t let it define them and who doesn’t just try to sit back and use it as an excuse. I work in the legal field and see people and their medical records all the time who have fibromyalgia and just let it overtake their life. This was a great read!! Keep living your best life, girl!

    x,
    Kristin

    http://www.kristin-marie.com

    Liked by 1 person

    • Helen's Journey says:

      Hi Kristin,
      thanks so much for your comment. Really love that my story can touch and talk to non-sufferers as well as fellow sufferers too (Esp as you come across Fibromyalgia in your work role & the different stages everyone is at)

      I’m glad to be at this positive place in my journey but I also only got here by experiencing being taken over by it and it defining my life – I think it’s an inevitable part of the process but I we need to fight to get our off. But then the defining moment I said hold on NO, this is not me, i still exist among the pain.

      I hope my story and encouragement in my support group can help others who haven’t got to that point yet, to reevaluate their perspective and get to actually LIVE again.

      Really appreciate your feedback & encouragement, thanks Kristin 🙂 x

      Like

    • Helen's Journey says:

      Whoop!! So glad you joined the group – hope you are enjoying it! Type anything is the ‘search this group’ option and all the posts about that word/subject will appear in a list (like 10 years of info on there haha)

      Like

  8. bcurtiss29 says:

    This post spoke to me, and I agree with all of it. I have been going through a rough season the past two months. I have been taken off of 4 different medications under strict doctor supervision which means horrible withdrawals. Two of the medications I had been on for years so that made the withdrawals worse. Two medications I just started and had to be taken off due to severe side effects. So 2 prescriptions worth of severe side effects plus 4 prescriptions worth of withdrawals during a two month period was hell. I definitely learned to enjoy the simple things in life.

    Liked by 1 person

    • Helen's Journey says:

      I’m so glad the post was able to speak to you for all you are going through. Med withdrawal can be brutal and also the side effects of meds still on too. It really is a rollercoaster ride! But I hope the next two months ahead have a turning point in for you and more and more joys for you no matter how small ❤

      thanks so much for your comment! Please feel free to come & join my facebook chronic illness support group http://www.facebook.com/groups/HellsFibromyalgia/

      Like

  9. FashionButHow? says:

    Thank you for sharing this. It is really inspiring to read that you’ve found power and will to move forward. You’re great example to all of us that we should make no excuses when we face problems but do our best to overcome them. I met a few people in my life (friends and relatives) with chronic illnesses and I saw their struggles. But they were able to find some direction and sometimes achieve more then average healthy people thanks to their enormous spirit. I find it now now in your writing, that’s really encouraging.

    Liked by 1 person

    • Helen's Journey says:

      Hi Sebastian,
      Thanks so much for your comment, I’m really glad my determined spirit was conveyed but also the depths of struggles.

      I’m so glad to hear of your loved ones still achieving and striving for life through the struggles. It really is a powerful drive in a way.
      I’m sure they have appreciated your understanding and praise throughout their chronic illness journey.

      Please feel free to share this post with them or send them the link to my facebook chronic illness support group also: http://www.facebook.com/groups/HellsFibromyalgia/

      Like

  10. TheraPaint says:

    My heart is breaking because I feel every single word in this. I’m youngish as well and you said it perfectly – you mourn your old life and self. This condition completely disorients your life. But finding hope and joy in the little things can get you through the hour at the very least ♥️ God bless.

    May I share this on my social media accounts?

    Like

  11. Chronically Hopeful Char says:

    Loved this post! Thank you for sharing these important lessons and for shining your faith so brightly. God is so faithful through it all. I found the point about not owning your diagnosis particularly interesting. I will be more mindful about my language use.

    Liked by 1 person

    • Helen's Journey says:

      Thank you, so glad Gods light shines from my words & experiences I’m sharing because he has been my steadfast rock through it all.
      Yes I think the power of words is something we can all pay more attention too & I’m so glad the post has encouraged you to do this 👌👌
      Thank you for your lovely feedback 💕

      Like

  12. Bella biscuit says:

    Hello Helen!
    I don’t know what to say! It was a very good post! I am sure you were really brave going through the illness. Last year I passed anxiety problems, and depression and thought it was the end of everything! But then realise my family was there, my friends were there. And you learn to love better and live!
    .

    Liked by 1 person

    • Helen's Journey says:

      Hey Bella, thanks so much for your comment. Lovely to hear you made it out of the darkness to find some light in love and your blessings in life despite your illnesses.🌞 Thank you for your bravery in sharing too & so glad the post spoke to you 💕

      Like

  13. Invisibly Me says:

    To echo other comments, this really is a fantastic post and I think I’ve learned (and am still learning, because it’s a constant gig this whole Fibromyalgia jazz) everything you’ve written here. Brilliantly said!
    xx

    Liked by 1 person

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