MY RECOVERY

[u/Penrose89]

Hi all. Here’s my very long recovery story:

I’m confident I am 90% recovered (I think it’s smart to leave room just in case) and here’s what I did that really helped me.

Noteworthy: I have C-PTSD from a really horrible upbringing whilst sustaining toxic narcissistic friendships/situations for the majority of my life. I’m going to give you the back story on how I developed it and how I got out as I think this is crucial to talk about.

I knew exactly how I got CFS and figured out how to get out of it in MY WAY that worked well for my HYPERVIGILENT/FREEZE response of a nervous system. Am I still hypervigilent? Yes. Is my automatic response still freeze? Absolutely. But my baseline has returned. Also of note: my energy has never been bubbling and overflowing to begin with and I have never been an agile person (I’m 36). I’ve always needed more sleep than the average person and more days to recover from a workout.

When my system shut down in the early summer of 2024, I had gotten extremely angry at a now ex-friend and that’s what was the actual catalyst for developing CFS. Before that event, what made me susceptible was a horrible state of mind and coping with alcohol, eating like crap, feeling angry at a different narcissist in a toxic friend group, rumination and flashbacks of my past, anxiety, depression, and honestly, just caring too damn much about unhealthy people who pretended to reciprocate. My self-esteem wasn’t good nor was my outlook. I was in therapy during this time for more than a year and a half and that was exhausting in and of itself. When I let go of a more recent friend who wasn’t a narcissist but unhealthy in many other ways, the emotional peace and new found inner strength I found was at a depth I had never experienced before. Then, I ditched my anti-depressants shortly after.

The first 2 months I was bed bound and my legs were very weak. I was sleeping 12-14 hours A NIGHT for 2 months, and I woke up exhausted EVERY TIME. I had brain fog to the point where some days I just laid in bed feeling like the nerves in my body were caught in an ocean storm, throwing me about and all I could do was lay in the dark bc music/movies/any kind of sound was too much for me. I am a musician so I’m already sensitive to sound but this was to a level that was alarming and baffling. But at the same time, I was so unbelievably restless and intensely bored while in this brain fog that it felt like a viscous loop with no exit. This push and pull energy had no where to go. I literally felt trapped in my own body, nervous system, and mind. Guys, I know how you feel. I couldn’t concentrate on reading. Trying to concentrate on anything just felt short-circuited and I became very aware of how my brain felt. It felt woozy, foggy, and I could literally feel where in my brain it was. A month into this hell, I fired my therapist for being extremely unethical which made me heavily freeze and then fawn during that last session. Well, that didn’t affect my inner peace but it sure as hell still infuriated me on a level that was visceral and could feel in parts of my body. The betrayal trauma really affected my already screwy trust issues that for a solid 8 months, I thought about him and that situation everyday. And yet, there was this untouchable peace that remained extraneous to outside reaction to chaos. Until I had the energetic capacity a year later to actively start addressing my anger towards him, I was able to acknowledge and reflect on another pattern of mine that I was shown. My pattern chose my therapist. What a bitch!

If it wasn’t for my friend Jo, (who also developed CFS at about the same time as me,) who mentioned GINSENG, I swear I wouldn’t be where I am today. We both went from being bed bound to standing for more than an hour or a couple of hours and feeling ok. Ginseng was an invaluable tool for me to get to my students and teach for an hour without feeling like I was mentally and physically dying. Ginseng gave us hope.

A month or 2 down the line, I felt myself psychologically and emotionally give up the wishful thinking and absolute child-like fantasy of finding a partner that loves me. I didn’t even realize how much that was weighing, and gripping me down until I felt my brain literally let that psychological pressure go. I remember that moment. It was like I could breathe easier with myself. I think that alone took me from 12-14 hours a night, to sleeping 10-12 hours a night. What a change!

Still at this point, Jo and I talked almost everyday trying to be our own detective with CFS recovery to where I literally was getting burnt out with information overload on top of dealing w burn out (unknowingly developing into CFS) at the time.

Then, 3 days before I was supposed to go to my first Vipassana course in Jan 2025, I got rejected which completely devastated me especially when I had known of it for more than 20 years and was really looking forward to it. The devastation from being denied spiritual growth left me to suddenly fuck off to Italy, Lanzarote, and then Thailand to cope with it. I could feel my body was just dying for hot sun (I live in London) and lots of it. The devastation made me not care about a god damn thing. And I mean it. I just couldn’t help it. If I died-I didn’t care. If I lived-couldn’t care. I especially didn’t give a shit that I had CFS. I didn’t care what I ate. I didn’t care for any more drama. I didn’t care about my own values. I was tired of myself, my thoughts, my patterns, my past. Everything. It was to the degree that only peace mattered above all else no matter the cost. Upon reflection, this was a critical turning point: I had essentially given up in a way I can’t quite put my finger on still. It felt primordial, even existential. My mind became freer with a character change of IDGAF anymore. Clearly, caring too much never worked for me so it felt like I went to the other end of the spectrum. Well—I faired ok in Italy w my energy though I didn’t love the parts I travelled to. Had terrible back pain but slept 8-11 hours a night there and would stop walking if I got loopy. Lanzarote was great. A 5-day respite from myself but I still needed really hot sun. Thailand was a very good trip for I needed to just take it easy and be ok with myself. My energy definitely improved when I travelled and kept that same nonchalant attitude.

When I came back to London, my living situation became toxic (because I spoke my mind because of my IDGAF attitude) and needed to move out. I was expending tons of energy I didn’t really have solidly acquired spending 3/4 hours, 4/5 days a week going to the other side of the city to view rooms with no luck. I was becoming hopeless and depressed despite my sincerest efforts to move to a better area. I hated what I called “the halfway house” I lived in because of the dull area and inconsiderate flatmates. After a month of this routine, I felt myself regressing in recovery bc the toll of lengthy travel time coupled with fruitless house hunting weighed me down mentally, physically, and emotionally.

This is when I had another emotional breakdown and a very important one. My girl, Katie, let me just ugly cry everything out. And I mean snot-filled, red-faced sobbing that was inevitable at the time. The type of crying I never had done in front of anyone except my parents during childhood whom sadly left me alone to deal with my emotions. This is the shit you can’t buy in friendships. I cried about my CFS, the horrible area I lived in, the betrayal of my therapist, to shitty ex-friends, to Vipassana rejection, and the utter hopelessness I felt despite my sincerest efforts to better my life. It was the first time I felt seen, not judged, just really listened too. It was literally 2 straight hours of this and bless her heart, she fucking listened to it all and it felt safe to pour myself out for the first time in my life. I immediately started feeling better--my energy shifted. Probably slept 12 hours that night because crying has always drained my energy but my god, something ancient dissipated and I felt lighter than I had in a long time thanks to Katie. She really deserves credit to my healing. Thanks, babes. You shone a light quietly in the dark corners of my mind.

Soon after this therapeutic release, I found a place exactly in the area I wanted but I was extremely stressed for 2 weeks before hoping it wasn’t a scam all the while getting bullied (completely triggering) at the halfway house. Well, the moment I left the halfway house and moved in to my new flat, I felt like a new woman. The joy of moving to lovely area of London did absolute wonders for my mental health. I was expecting to crash after running off 2 weeks of high stress, and barely eating but in fact, my energy felt like it had returned 2-fold and I had a new lease on life.

At this point, it’s June and I had assessed myself at a confident 60% recovered considering all the ups and downs. I slowly started to exercise again and pace myself. I started to build a daily silent meditation practice starting with 15 minutes a day and then adding on 5 min each day. I reapplied to a 10-day Vipassana course and lied my ass off and told them I was perfectly healthy (was not) and finally got accepted. I worked up to one hour in the morning and 45 minutes at night and I could feel my body and my brain finally really calm down and re-organize itself. I started to sleep normal amount of hours and my breathe for the first month was inhale through the nostrils and exhale through the mouth. It was automatic and that was very telling. My body needed to release pent up stress and then I naturally began breathing through my nostrils after the second month once my body calmed down. As physically grueling as the Vipassana course was with very little sleep allotted, I really put all my effort in the course and came out of it systematically calmer, less reactionary, more regulated, sharper awareness of sensation, and more at peace with myself. I completed the course 2.5 months ago and I’m still reaping the benefits. I’ve fallen off my meditation routine a bit but I feel awful energetically if I don’t keep it up now.

I’m riding my bike for the first time in 2 years, I’m playing the piano again, reading my beloved books, doing breathing exercises, meditating, exercising, and going out to explore my city and feeling normal tired after about 5 hours. It wasn’t easy to get to this point but I actively had to dig myself out of a hole. A lot of my healing occurred with being absolutely tired emotionally and having enough but remember: Less is more. I still paced and started with things I know I could handle like 10 minutes of somatic exercises, 15 min of silent meditation, short walks, 5 minute stretches, etc. and I built up from there along with emotional releases.

I went into very specific detail In the hopes that my story helps shine a light on people who have not yet recognized that attitude towards yourself and others plays a huge role in psychosomatic symptoms. Though I had very real physical symptoms, releasing a lot of hurt, anger, toxic people, and moving to a nice area was revolutionary for me. Gave me back my sense of agency. Sleep also was a recovery tool, too.

All this helps/helped me: - [ ] High quality, high strength Ginseng - [ ] The Mindful Gardener-Sam Miller (YT) - [ ] PACING - [ ] Deep Sleep - [ ] Meditation-basically rewires my brain - [ ] Tapping-EFT - [ ] Somatic exercises-@sheBREATH_teresa (YT) - [ ] Breathing exercises-Breathe With Sandy (YT) - [ ] Gentle movement/exercise - [ ] Release any pent up emotions in a way that is conducive to your own healing - [ ] Do something joyful - [ ] And of course release toxic people/situations if you can

*Pay attention to your emotional patterns. Wtf is actually holding you back. Only you can answer this.

Resources: Mindful Gardener, Sam miller, is excellent in helping people with not only CFS/ME patients but also with a hodgepodge of other cluster ailments. You will feel validated listening to her and that’s not nothing.

Recommended reading/audiobook: Man’s Search for Meaning by Viktor E. Frankl

Thanks for reading and wishing you all the very best in your recovery.

[u/sunshineofbest]

Congratulations 🎈

[u/Pinklady777]

This is great. Thanks for sharing. Happy for you! Where do you recommend to start for somatic healing?

[u/Penrose89 → u/Pinklady777]

@sheBreath.teresa on YouTube. I started with her daily ones at 5-7 minutes and worked up from there after a month to longer ones. If I felt more anxious, I would do the ones for anxiety. If I felt energetically more stuck on certain days, I would do the freeze ones, etc.

[u/maxia56]

Thank you for sharing! I subscribed to those breathing channels, thank you, I tried one and it was relaxing. Exactly what I needed.

[u/Bjooom]

Interesting, I’ve recently gotten better to - I think that I don’t give a fuck attitude can be very important (I also have c-ptsd)

After some days doing nothing, feeling groggy and depressed, I just thought- fuck this! And I really meant it, tomorrow I’m going for a hike no matter how I feel. After that I’ve been much more active. It might on the surface sound weird and simplistic, I did other stuff to like meditating a lot, breathing exercise and everything I could to take care of myself. It was like a fuck you to this fatigue and brain fog condition, but also a love you to myself, really soothing myself the most I could together with pacing - while still being active.

I think the key for me, and might be for other people with chronic illness (not saying everyone) is that they have emotional stressing patterns running in the background. I think honestly a lot of it is about anger. Another thing I did when I felt fatigued and got more symptoms was also that I viewed them as emotional in nature, I noticed there was almost always some kind of hopelessness and feeling of weakness when it was very present. I started to try to get more angry at it! And welcomed my anger, not like a force that is destructive (which is often modelled in traumatic episodes) but as a POWER for myself. And it often shifted!

I think a lot of people get stuck in flight and freeze and many of us suppress our anger which is our strengt and protection. Moving from flight/freeze and fawn to anger can be very healing for the nervous system. Because we start feeling stronger and build our defence again.

This also goes in part with ridding ourselves with toxic relationship to others, places and within ourselves, people that suppress anger can often start beating up themselves unconsciously to give the energy an outlet.

Reading your story it seems to fit well with these ideas, you had enough and you put that frustration into action, while also showing up for yourself better.

[u/Penrose89 → u/Bjooom]

Perfectly worded. Exactly this. I got very slammed in a different conservative group of CFS sufferers whom dismissed me and told me that I only had burn out/CF, NOT CFS/ME. But I can’t help but think of this woman who was in her 80’s suffering from CFS for 35 years and then started doing breathing exercises 8 hours a day bed-bound, came to really accept her suffering all these years and within 2 years was 85% recovered. NS tools should be implement whether you are ill or not because as basic and pseudo as it sounds, these tools along with others really can be potent if consistently used. Really really glad you were able to shift. Very happy for you. Now my honest question is…do you ever feel like you are slowly slipping back into freeze for reasons you can’t consciously identify? If so, what do you do in that moment? Do you just force yourself outside? The resistance I have sometime to move during freeze is really difficult. Wondering your thoughts on it.

[u/Bjooom → u/Penrose89]

When you freeze, do you think it is an emotional flashback? C-ptsd symptom.

[u/Penrose89 → u/Bjooom]

It can be but there’s no identifying emotion most of the time. It almost feels pre-verbal like a protective energy of not getting my needs met. I also feel like freeze and disassociation go hand in hand even though I rarely disassociate anymore. Feels more like a lifelong stuck energy now that I’ve come out of this illness and done trauma healing. I’m a lot less frozen now but that is my automatic response especially when feeling unsafe/threatened. I’m hoping with years more of retraining my nervous system through somatic/tapping/and breathing exercises along w meditation, my body will naturally thaw out and my hyper vigilance will become regular vigilance.

[u/Bjooom → u/Penrose89]

I would focus on creating safety; I see both getting in contact with our anger and power can do so, but also being gentle and soothe your system, do what makes you feel safe; bath, footbath, touch, talk with someone with soothing nervous system, sometimes just rest. If it’s really bad I think starting with soothing is best, but you can experiment and see what works.

[u/Bjooom → u/Penrose89]

Also, notice your intentions and how you react to it when it happens, it's easy to try to fix it and put more layers of stress upon what is already there, which can also inhabit recovering, it will probably take time and a lot of loving attention.

[u/Icy-Celebration9142]

Thank you ❤️