From severely disabled to living vibrantly again! (Chronic Fatigue Syndrome, Fibromyalgia, & IBS)

Hey everyone! I just wanted to post an update after almost a year since my original post. At that time, I had come back from a serious low point that kept me completely bedridden, but was still far from being able to return to work or school: I was plateaued in a cycle of fear and symptoms that made it extremely physically taxing to do the simplest everyday activities like walking from one room to another, doing the dishes, or even just watching a movie. My biggest psychological symptom was agoraphobia (anxiety and panic over leaving home, using public transport, etc.), while the major physical symptoms I experienced were all-over pain and stiffness, GI pain, food sensitivities, and major fatigue.

Even though this year has been extremely stressful due to the pandemic, it's also been an incredible year of healing for me, and I'd love to share that with you, as well as what I'm working on now. Looking back on where I was a year ago, the difference is amazing, but it was so gradual while it was happening that it was easy to overlook. I started my mind-body journey at the beginning of this year through the Curable app, as well as listening to lots of mind-body podcasts from Curable and Nicole Sachs. The most important building block for me was finally believing in my head that all my endless health struggles could all have a mind-body cause. Even though I didn't believe it in my heart (and still sometimes don't), that was the first step.

After seeing some progress just on my own, I started working remotely with Tim Norton, a psychologist from the Pain Psychology Center. Working with him helped me deepen my understanding of how my past, my current emotions, and my symptoms were connected. It also helped to have someone to keep me on track and remind me when I get stuck in a fear cycle.

Now, I feel physically almost back to the level of function I was at in 2016, before things went steeply downhill and I became seriously disabled to the point of being bedridden, then using a wheelchair for so long. From the perspective of 2016, that level of functioning didn't seem good at all--I had (and have) constant pain, GI issues, and fatigue. But I could live life. I was going to grad school, had a job and a social life. I could travel and do normal things, even though I did them with quite a lot of anxiety and depression, and never felt like I could keep up with other people my age. Then in 2017 that all changed, making everything that came before seem like a walk in the park.

Finally, after four long years unable to work or go to school, retreating totally from life to focus on my recovery, I'm starting to feel like life is possible again. I'm daring to dream again. I feel capable of accomplishing something in life.

Despite the symptoms I still have, here are some things I've done for the first time this year that I wasn't able to do in the past 4 years: stay in a hotel, take a train out of town, start gardening as a hobby, ride a bike, go on a short hike, work on the computer for longer than an hour, incorporate more foods into my diet, wean off acid blocking stomach meds, having multiple activities in my day.

While a year ago, a typical day would include painstakingly trying to walk up and down the street (if that) in the morning, meditating, sitting upright for a while on my patio, maybe doing a single chore, doing 10 minutes of stretching, and laying down in between each activity, many times per day. Even though I was not bedridden, I still spent a lot of time in bed. And my diet was extremely restricted: vegetarian, gluten free, lactose free, and low FODMAP. I was happy that I could at least feed, wash, and dress myself, but I was far from being able to pursue a normal life with work and school.

Now, a typical day includes taking a short walk or bike ride every morning (without feeling like I'm climbing a mountain), showering, working on the computer for a couple hours, cooking a healthy lunch, running an errand outdoors, taking a nap, making a healthy dinner, cleaning up, journaling, and relaxing with my partner. While I'm still in pain, I don't think of it all the time and it doesn't stop me from doing as many things. I have also reincorporated everything into my diet so I now eat whatever I want. I still get GI symptoms, but they are not correlated with what I eat, so I feel free to cook whatever I want.

Overall, I feel hopeful and empowered when looking back at the major changes that this mind-body work has made in my life. I still go through periods where new symptoms pop up, whether it's a new pain or a weird skin issue, and I can get stuck in a fear cycle again. Then when I notice what's happening, sometimes I panic that "it's all starting over again." However, these tools have helped so that these periods get shorter and come less often.

I hope someone reads this who is just starting their journey and feels encouraged that there's a light at the end of the tunnel!

 

Thank you HappyLittleClouds. Digestive issues are my main problem as well. Even the slightest bit of discomfort can send me into an emotional puddle. I do know that the TMS work is working because I do feel certainly much better then I have in the past. It's the slow progress and my patience that I have to work on. The hardest thing is to carry on with activities when feeling bad. I know we can overcome this and the support on this forum is so very helpful. Thank you to all of the Grand Eagles and other supportive folks that are here to help us all out of the goodness of their hearts. We all need a place to turn when we have run out of options in the medical world.

 

Thank you so much

I'll forever be grateful for the encouragement you gave me when I needed it. Thank you so much!

 

Wow that is kind of you to say. You're welcome!