Photo by Becca Tapert on Unsplash
Today, May 12th is ME/CFS and Fibromyalgia International Awareness Day. It’s an important reminder that there is still a lot of misinformation as well as being an opportunity to raise awareness and supporting further research into eventually finding cures.
2020 was a huge struggle for me as I finally got some answers about my health that I had been wondering about for a while. I had an accident at work and unfortunately it led to this bittersweet feeling. I mean I had a reason as to why I had the pain and fatigue, but I now have to deal with living with Fibromyalgia. I just remember thinking ‘what the hell do I do now?’ it took me a while to even know where to start. I was upset and completely gutted that my life was going to change. Don’t get me wrong, I still get upset and frustrated, but I know it will pass.
After my diagnosis, I worked with the Dorset Pain Management Service. I learned a lot about chronic illness, pain and how it can affect your body. As well as teaching you strategies to deal with your pain. Not only have I learned from this programme, but I have learned a lot about myself.
I am sharing a post about what I learned from my chronic illness in the hope that it helps other people who may have just had a Fibromyalgia diagnosis or having a tough time with their chronic illness. Here are 5 things that I have learned from my chronic illness:
1. Strength
I didn’t think strength was one of my qualities; I just never thought of myself as strong. However, I have learned that to live day in day out in pain, you have to be strong. Like my partner tells me it is far easier to give in and let the pain rule your life; it takes an enormous amount of strength to live and challenge the pain and fatigue each day.
When I have a bad day because of pain, fatigue or both, it can be hard to start again, but I do every time. On my worst days, I rely on support from my loved ones, affirmations and journaling to keep my strength and determined attitude.
2. My Mental Health Is Vital
Before being diagnosed with a chronic illness, I knew that my mental health was important; however, I didn’t know how vital my mental health would be when learning to live with a chronic illness. Your mental health contributes a lot. I have learned that ensuring I take time for my mental health helps my mood as well as my tolerance for the pain that I experience. My mood really can affect my ability to deal with the pain and fatigue that I have.
Practising self-care is a really great way to keep my mindset as positive self-care it helps me to focus on myself and the activity that I am doing. On the other hand, my mental health isn’t always great. It can be so difficult t stay positive when you are in pain or so fatigued you cannot get out of bed. Sometimes, it can be so incredibly lonely.
Every day, I have to wake up and start fresh. A daily, fresh mindset and attitude helps to keep me going. If I have a bad day or two, I just have to remember that painful days do not last forever. Some self-care activities that help improve my mental health:
- Massage my legs (usually the most painful)
- Bubble baths
- Writing in my journal
These are my go-to tasks to help boost my mood and make me feel better.
Photo by Heather Ford on Unsplash
3. Pacing Is My Friend
Before my work accident and my diagnosis, I would be moving at 100 miles an hour, having busy days, planning so many social events and have a to-do list as long as my arm. Nowadays, I have to do things very differently. Learning how to pace myself is something that has been incredibly difficult and sometimes I still get it wrong. On a better day, I can get carried away and then end up in bed for a few days in so much pain or too fatigued to move. Pacing is something that I am going to continue to learn.
Using my bullet journal to plan my week has been a helpful tool. Having tasks separated into red, amber and green (red being the most energetic; amber being a medium effort task and green being easy and non-demanding tasks), I then spread the more demanding tasks across a week or two to ensure I do not over commit myself.
I do still get frustrated; I have so many things that I want to do and my body just doesn’t want to play ball. But I will keep practising the art of pacing and I will learn a new sense of normal when it comes to achieving my daily or weekly goals.
4. The Power Of Movement
When I learned about exercising and the power moment at first I thought ‘How does that work?’ Moving when you are in pain?’ but learning the science behind it has made things more understandable.
I have been having and am still having hydrotherapy and physical therapy. I have to work on building strength in my knee after the accident. Tai Chi and short walks have been helping me to start moving more each day. I know I have a long way to go, but hopefully every day, I am getting closer to getting stronger. Listening to my body is so important and I am feeling mentally stronger for it.
5. It Doesn’t Mean My Life Is Over
This sounds a little dramatic especially to people reading this, who don’t have a chronic illness. I knew what I wanted to do with my life and then that had to be put to bed. Now I am left with a lot of questions about where I want to be and what I want to be doing. I just have to remember that I can still do things that I want and my life will still be gr4eat, just a different version.
Before I was diagnosed with Fibromyalgia, I didn’t know much about chronic illness or how it affects the body and mind. It has taught me so much as well as changing my life. I am trying to stay as positive and motivated as I can. I have been super fortunate to have worked with the Dorset Pain Service and have a fantastic support network in my life; I will create the life I want.
This is so motivational. The Power Of Movement is really important. Thanks for shairng.
Thank you for your kind comment. Xx
Thank you for sharing your lessons from your Fibromyalgia journey. Its not easy to say the least. This is why your toolbox of tips here are SO precious and needed. Sending you positive vibrations to ease your days ahead <3
Thank you so much Zeenat, I really appreciate your kind words xx
Great post, thank you for sharing your struggles! I am sure these kind of posts will be helpful to anyone to know and be aware. I know someone with a chronic illness and I can’t imagine the amount of strength you have to have to constantly be willing to improve your mental and physical health 💗 Your blog is definietly a motivator for many people including myself!
Thank you so much, that was a really lovely comment to read. Please could you link your blog, so I can have a read xx
Yes sure!
Excellent post and some wonderful positives you’ve learned from what’s obviously a really painful and difficult condition to manage. I’m sure this post will help plenty of others who are just receiving a diagnosis and are feeling confused and scared xxx
Thank you for reading and you kind comment Jenny xxx
My stepmom has this condition and I see how painful it can be for her. Thank you for sharing this personal post and spreading awareness. Sending you lots of love and positive vibes.
It is definitely hard to deal with. Thank you for reading and commenting.
Sounds like you have a clear understanding of what you can/have to manage. My brother has CFS, but his flare ups are a lot less frequent nowadays. But it’s always there in the back of mind.
I definitely have learned through trial and error! That great he has less flare ups. Thank you for reading and commenting.
Great post! Razz and I both have chronic illnesses. Razz – CFS, Roze – fibromyalgia, osteoarthritis, spinal stenosis that requires surgery as well as some more ‘normal’ issues like high BP and GI issues. To say life isn’t what it used to be would be a tremendous understatement. Like you though, we have both learned a lot from being chronically ill. The first and most profound is we are both much stronger than we thought we were. The other big one you also mentioned is pacing. We would never get anything done if we didn’t pace ourselves and listen to our bodies.
This without chronic illness can’t really understand and that’s ok. Like they say “You don’t get it until you get it” and I wouldn’t wish FMS or CFS on anyone. Thanks so much for this post, you said it well!
Roze and Razz
Thank you for sharing about your experiences. I have a really supportive family and partner but sometimes people just say oh I am tired too, or I hurt too. It’s always that different kind of pain and fatigue. Thank you for reading and your kind comments about the post. Xx
This is SUCH an inspiring post, Lauren. “my life will still be great, just a different version” is a wonderful outlook. I can’t begin to imagine how hard it must be to function with chronic pain every day but all the things you’ve learned, particularly pacing, are so valuable. Thank you for sharing this xx
Thank you for your kind comment Lisa. Xxx
This is such an important post! My mum suffers from fibromyalgia too and every day I see how painful it is for her – anyone with chronic illnesses like these is genuinely so strong! I know my mum still struggles with pacing herself too, I think with things like these is constantly a learning process. Thank you so much for opening up about your experience, I know so many people will find this invaluable x
Thank you so much! Yes it takes a lot of strength to wake up and do the pain and fatigue all over again. Thank you for reading and commenting. X
Thanks for sharing your story. I have heard of Fibromyalgia, but not sure exactly what it was. Chronic disease does define us. You are stronger than you think you are.
Thank you so much Kevin! It definitely doesn’t define us! Thank you for reading and commenting.
This is such a great post lovely which is bringing awareness to such a devastating and horrible illness. I wish more people understood the pain and fatigue caused by these illnesses and it’s not just ‘being tired’. I know my chronic illnesses have had a detrimental effect on my life and everything you’ve learnt about your illnesses is very similar to myself. I take each day as it comes, try to keep as positive mindset as possible and try to not let my illnesses rule my life (that’s easier said then done but I try haha). Thank you so much for sharing this post, I think alot of people will relate to everything you’ve written! Xo
Elle – ellegracedeveson.com
Thank you for sharing too, more awareness is definitely needed, as you are right it is not just feeling tired. A positive mindset is definitely something you need to have but it can take its toll sometimes. Thank you for reading and commenting. Xx
I learnt that my mental health is my wealth! Now, above everything else, I place my mental (and physical) health. If I’m dipping, I make an effort to figure out how to improve that!
That is a good attitude to have, thank you for reading and commenting. Xx
I totally agree, its good reminder and not dramatic that we still can do things no matter. It doesn’t mean the end going through health issues. I kinda feel it because I go through health issue but different things. Thank you for sharing this <3 I'm so proud of you for being so strong and just as always amazing blogger <3 Sendling you much love
Thank you so much for your lovely and kind comment. I really appreciate your support. You are an amazing blogger with so many interesting and helpful posts xx
Thank you so much for bringing more awareness about chronic illness and Fibromyalgia. I don’t know anybody who I’m close to who has a chronic illness so it’s really good for me to learn about it from blogs. I admire you for staying positive despite all you are going through, and finding ways to get through each day a little easier. That’s interesting that you do Tai Chi, I took classes for a while and really enjoyed it 🙂 x
Thank you Sophie, that is really kind of you to say. It definitely isn’t easy but your mind is powerful, so staying positive does help. Oh really? It is really fun! X
Thank you for sharing. Wish you strength and wellness 🙏
Thank you!
Thank you for sharing your story, Lauren. It sounds like it must be incredibly difficult for your body to try and keep up with the 101 things your mind wants to do. I think many of us could benefit from pacing. I enjoyed reading what techniques have helped you thus far. Sending good vibes your way, always.
Crystal | http://www.amazingbaby.app
Thank you for your kind comment Crystal, I really appreciate it. Xx
I’m so happy to hear that you have a great support system. Thank you for sharing your story Lauren. I know it’ll be so inspiring and help so many others who have also live with chronic illnesses. Sending lots of love and strength your way!
The power of movement is always a strange one until you try it. I had hydrotherapy for months and trying to explain to people how good it felt afterwards was always tricky.
Yeah definitely. I have had physiotherapy and hydrotherapy and it was very beneficial x
Moving is so important! I suffer with ME/CFS and know I feel worse if I don’t move. I used to be in an FB group which I subsequently had to leave as any mention of any kind of exercise (even sitting down and gently moving various parts of the body!) was frowned upon.
Moving is part of the medicine, you don’t move, your body becomes de-conditioned and then you have more pain. How strange that was frowned upon! Thank you for reading and commenting.
I’m sorry that pain is a daily part of your life. I applaud you for finding ways to keep your life moving forward despite your constant discomfort. I think your positive attitude is definitely going to be one of your strongest allies in your battle. Mindset plays such a huge part in our lives, but we often don’t listen to ourselves until forced to do so. I’m happy that you know now how strong you are. Strength can be another one of those things that lays in wait until we’re tested. You have me curious about movement, like Tai Chi. I never thought of it as anything but sort of meditative. So interesting. Thank you for opening the curtain and sharing your life with us.
Thank you for your kind comment Cassie. Tai chi is great if you can’t do the ‘usual’ exercise, it was helpful. But I have been told I can now use the gym (only certain things) first time in 5 years! So happy. Thank you for reading and commenting.
I love this post! You are so strong and you have learned so much too!
Thank you for reading and commenting.
It’s such a moving post, as you were describing your struggles with the illness, and your coping strategies. I am beyond impressed as you are counting your blessings. Glad you have a supporting partner, family, friends and means to live a thriving life.
All the best. xx
I really appreciate your honesty in your struggle with fibromyalgia and how you are learning to manage it. You included some great suggestions. I sincerely respect the struggle is real and definitely see your strength in what you have shared in this post. Thank you for writing this post. ☺️
Pastor Natalie (ExamineThisMoment)
Letstakeamoment.com
Thank you for reading and commenting. X
Although it must have been hard to hear when you were first given the diagnosis, you seem to have discovered a lot of positive things about yourself since then. That strength will see you through, and as you said, your life isn’t over
Thank you for your kind comment x
What a raw and motivational post, Lauren; I really needed to hear these words right now. As someone who has been struggling with a chronic illness for 7 years now- it definitely made me a strong and grateful woman. I’m applauding your amazing strength. Thank you so much for sharing this. Yes our lives are not over. xx Penny. | http://www.whatdidshetype.com
Thank you so much for your kind comment. You are also so strong! Thank you xx
Thanks Lauren for sharing your journey with chronic pain. I know your blog will help others. I also relate to your lessons and appreciate your wisdom.
Many Blessings
Lisa
Thank you for your kind comment, reading and commenting. X
I am not trying to sound ignorant but I honestly just learned about this chronic illness. Thanks for sharing it. I’m sorry for how things are supposed to change now because of it, but, love to you. Keep positive thoughts and keep going, your life isn’t over, it’d just a bit different from how you were used to it.
It is not ignorant at all, if you don’t ever experience it yourself or a loved one, you may not know. Thank you for reading and commenting. X
Thank you for sharing! I have been experiencing chronic pain and my doctors suspects it is fibromyalgia. It very positive how you are embracing life and pushing through. You are inspiring! I look forward to reading more posts 🙂
Just know there are things that can help improve your situation. Good luck on your journey. I have plenty of posts for you to read on the subject x
Thank you, that means a lot 😊. I sure will be reading up on it.
Thank you! It’s good to hear your partner made the change and they are happier because of it. It makes a big difference.
Love these. I’m currently signed off work due to a bad flare of ME/CFS so can definitely relate. Number 2 is so important, my mental health has such a massive impact on how I can manage my fatigue. But I’ve definitely lost sight of that sometimes when I feel I have to prove that it’s not ‘all in my head’ and that I know what is and isn’t depression. Chronic illness does make you stronger though and I think more compassionate.
Thank you for sharing your experience too. Thank you for reading and commenting.
Thanks for sharing your journey Lauren – it’s very inspiring. You are helping so many others out there who are struggling with a chronic illness. Sending positive vibes.
Jade MumLifeAndMe
Thank you for reading and your kind comment x
Thank your for sharing, I have learnt similar since my Diabetes diagnosis 6 years ago, to be calm and not to get so worked up about things, which is not so easy! Having a chronic illness/condition is not always easy I certainly have felt that over the years, learning the ways to enjoy eating and not be worried about others. My mental health does slip from time to time with my Diabetes esp. with the summer coming, but hopefully it will improve 🙂
Thank you for reading and commenting your experience.
These are valuable life lessons. I like no.5 the most. You’re a very strong person, Lauren. Keep it up!
Thank you so much for your kind comment. Xx
Thanks for sharing. I’m waiting for my appointment at the pain management clinic so I hope that together with them I’ll be able better manage my pain. Thanks for the practical tips.
Thank you for reading and commenting. If you have a blog can you link it.
Thank you for sharing! These are great things to learn and I think they can help others, whether they have a chronic illness or not. You are amazing!
Thank you for reading and commenting. Can you link your blog?
Thank you for this post!
Im happy that you had the strenght to see the positive in the situation xx
Mother also has fibromyalgia; because her kidney specialist (she got a kidney transplant) wouldn’t do a thing about it, her foot broke. Just with the leg pain; she fell *after* it broke- and at the ER they basically laugh at her face because « it doesnt happen » 🤦🏽♀️ She had a boot for like 8months.
I am learning to wrap my head around the fact I have restless legs, a sleep illness that keep you from sleeping as you need to move the legs to try to ease the pain/uneasiness 😬 I had it diagnosed years ago, but at first it was just my legs moving on its one while I was unconscious- it’s just recently that it started hurting/constant pressure as i’m trying to rest and sleep. Some days im fine, and some days it bleeds into daytime too.
I have had chronic pain for years and I have learnt that it’s not understood and dismissed as being in your head by ex friends. I noticed that illnesses are seen as a competition my pain is worse than yours. It’s just so tiring to listen to. The pain management service in my area is very underfunded – they discharge you as soon as they can.
That is a shame that it is underfunded because they do great work. I have heard about competition with pain. Thank you for reading and commenting. If you have a blog please link it.
I suffer from chronic pain, also caused from an accident at work. I have been through so many things to help, but one has been a help for me. If you haven’t heard or tried before, search Google for “Mindfulness”. Of all the things I have tried, this one suggested by one of my doctors has really helped me. I hope this is something that will help you and others alike. Great post.
Cheers
Yeah mindfulness like tai chi can really help! Thank you for sharing!
Love this. For me, living with a chronic illness I also think it’s so important to allow yourself the opportunity to get upset sometimes. Like, yes this really does suck, and yes I am going to allow myself to wallow and feel upset – just not for too long!😅
Yes definitely! Thank you for reading and commenting. If you have a blog can you link it?
I’ve really enjoyed reading your blog and will continue to do so!
I’m not 100% sure how to link (I’m new!😂)… is this is?
Thank you! I have commented. X
Thank you! ☺️
I’m so sorry that you have fibromyalgia too, Lauren! I developed severe fibro back in 2011, although I can trace symptoms going back to early childhood. Check out the guaifenesin protocol if you’re interested, it’s the best we’ve got xx
Oo I will have a look. Thank you for reading and commenting. Can you link your blog, so I can comment x
Thanks for sharing! I’ve been living with fibro for over 20 years!
It is horrible isn’t it.