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:
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.
Do you or someone you know live with a chronic illness? What are some things that you have learned from living with your chronic illness? I’d love to hear in the comments.