Thursday, 26 March 2015

Fibromyalgia and ME

This year marks fifteen years of living with a chronic illness. When I was 16 I was diagnosed with ME (Myalgic Encephalopathy) also known as CFS (Chronic Fatigue Syndrome). It took a long time to get that diagnoses after hundreds of tests some of which were invasive. I was very normal healthy sixteen year old full of life and very fit, then this chronic illness took over and I was sleeping 12-14 hours a day and in constant pain. With ME you also suffer other symptoms. My life was officially taken over by it, with a severe reduction in my ability to any daily or normal activities. Things didn't improve for me over the first few years, the pain got worse, and it was sometimes hard to get doctors or nurses to take me seriously, ME/CFS is unfortunately surrounded in controversy due to the fact there are no answers, no conclusions, no tests and no reason for anyone to have it. There are no remedies or magic pills to take and make it go away. I ended up having to leave full-time education at sixteen living with ME. I relied on my parents for everything that included needing help to even get dressed, and I was bed bound for a long time too. The illness affects up to 12000 people in Ireland.



After 3 years I was finally diagnosed with Fibromyalgia, and this explained the pain issues I was having as well as a host of other problems. I felt like a little science experiment sometimes, especially with all the tests I was getting and all the long stays in hospital. Fibromyalgia is essentially widespread pain with other symptoms including fatigue, sleep disturbances, muscle weakness, palpitations, memory problems, and that's just to name a few. As I'm in so much pain, I like to avoid crowds. I need space I can't stand being bumped into, it causes pain to go through my whole body. A hug can do the same thing to me too! A gentle one is fine, but a bearhug? Avoid! 

Everything really changed for me in those years, I had no outlet, no friends, but one thing never changed and that is the support from my parents. I never would have gotten through those years without them, we've always had a strong bond but it seemed to be further strengthened with my illness to contend with.

By the time I was 21 and after discovering an amazing rheumatologist things started to change. It made a big difference to have a doctor that took the illness seriously and had a great understanding of it. I started to learn how to cope with things and how to listen to what my body was telling me. Things started to get better and with Mum and Dad's encouragement I started to spread my wings, and as always they were there for the fallout and the nights of me crying in pain.

To this day I still have Fibromyalgia and ME and I'm now 30, it has never gone away and nobody can see it. It's invisible but it is there always lurking. Some days I feel like I can take on the world and other days a simple task can seem impossible. I start my day with 5 coins, each coin is for a task ahead within the day, once the 5 coins are gone I'm broken and have no energy. I always aim to start with 5 coins but that doesn't always work out and I have to accept that I have to take it easy and let my body recover.



For me finding routine was the most important part of living with this chronic illness, I don't like going out of routine as it can knock me back completely for weeks. I get relapses and I never know how long a relapse will last.

My husband and I are nearly 8 years together and he knew it would be hard, and I knew it would be hard for him too, he didn't sign up to Fibromyalgia, but he is an absolute star and never ever complains and has a complete understanding of how I/we deal with this illness. Things can be hard as we have a three-year-old daughter so you can imagine a chronic illness and a toddler can be a struggle but with the support of Mum, Dad, and Kevin and a very close group of friends they help to make it easier. Plus just a smile from Lillibug can make you forget any problem you have. She doesn't understand why some days I can't carry her, or why some days when she bumps into me that it hurts more than others. Sometimes it upsets me that I can't always do the things I would love to do with her on a day to day basis.



Coping and living with Fibromyalgia can be hard but with great support, love, patience, and understanding, all those can make all the difference. 

I'm sending you all a fibro hug xo 

To learn more or find support please find links below:

20 comments:

  1. Wow you have been through so much but look at how far you have come and you are still going. I'm so glad you wrote about this i now have a better understanding, I hope more people read as it will open their eyes to what you go through every day xx

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    1. Thank you so much Sara x I didn't realise how hard it was going to be to write this but glad that I did now :-) I hope it gives an insight to how this illness can affect someone xxx

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  2. And you say your not an inspiration?!
    Wow, you really have and are dealing with so much.
    I can't even imagine what it's like not to being able to carry Lillibug when you want to, or to receive a bear hug.
    Well done you for sharing, they are 2 illnesses I wasn't fully aware of and their affects x

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    1. Thanks Eimear :-) It can be hard on a day to day basis especially with Lillibug but she definitely makes those hard days better xx

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  3. Christ Danielle you're amazing. Seriously. I don't know how you do it, I complain about stupid things but I can't believe you are so good while suffering so much - I don't think I've ever seen you complain once. Thanks so much for sharing, that can't have been easy to open up like that. Fair play to you, hope today is a good day x

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    1. Ah I'm not that good, I like to complain about everything else haha This post has been sitting in drafts for a very long time and only now felt brave enough to share it. Today is a good day, thank you Sharon xx

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  4. You are amazing! You've been through and continue to go through so much, your Mam & Dad and Kevin & Lillibug must be so proud of all you've achieved.
    Well done on writing such an open and honest account, that can't have been easy, you should be very proud of it.
    Nicola x

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    1. Thank you Nicola, I hope they are proud too. I would be totally lost without all their support x

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  5. Danielle, you are an absolute inspiration! I am sure it is not easy. i didn't know too much about this condition. thanks for sharing your story xx

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    1. I'm so glad that I was able to share my story and that you can walk away knowing a bit more about Fibromyalgia and ME. Thank you Grace x

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  6. Danielle, I never really knew what ME was before so thank you for sharing. As a Mum of a 2 1/2 year old I can only imagine how this can impact everyday life. You really are an inspiration x

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    1. I'm glad I could share. Yes day to day with a toddler can be hard but oh so worth it ;-) You are very kind to call me an inspiration xx

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  7. Danielle, only getting to read this now! Firstly such an amazing post, well done hun that can't of been easy write! You are such an amazing person and I for one feel so lucky to have crossed paths with you and call you a friend! To be living with not one but two illnesses is such a huge cross to carry hun but you are a true inspiration to us all and such a wonderful mum and role model to your little lillibug, hugs right back hun xx

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    1. Aw GrĂ¡inne thank you for the beautiful words you actually got me tearing up here! xx

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  8. How did I miss this? I can't believe I never read this post. I'm so sorry for the bear hug in London!

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    1. That's okay don't worry Laura I was great that day and the bear hug was great ;) See you again soon x

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  9. Great post.....Fibromyalgia is frequently associated with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.fertility acupuncture philadelphia

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    1. Very true and something that has always been associated with it since day one. However is it that Fibromyalgia can bring these symptoms on or is it the other way around?! The findings keep changing :-(

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  10. I love this it reminds me a little of me. I was just recently diagnosed with Fibro and I'm 22. Unfortunately it's getting me kicked out of the military. My whole life is changing and my husband doesn't understand it. Some days I have great energy and want to do a lot but I still haven't learned my new limits and end up pushing my self to far. Is there an easier way to tell when you need to stop before you regret It?

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    1. So sorry I'm only seeing this now!!! I hope everything works out for you and I'm so sorry you have to leave the military. There is no way of knowing your limits until you try them. I find that long journeys, or certain exercises could have me crippled for days after. Knowing this I usually plan around this.

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