fragmented.ME …
my healing journey ...

my healing journey : Step : 07.07.2021 …

My Healing Journey 07.07.2021 …

Active Stabilisation Session (1) …

I pre-booked this session the minute I finished the Care Planning Session …, working it around YFC_J afternoon availability and leaving enough time for my recovery as I have been extra poorly of late because of doing more owing to my husband’s health issue.

I am eager to start this part of the programme, it feels like getting down to the nitty gritty.

Preparation & Setting Up …

As soon as I received the write up from my active stabilisation session (1) I also received the login details for my next zoom appointment. As I have said before, it really does feel very efficient and much better catered for someone with severe ME than I’ve experienced anywhere else before. This said, I have again somehow lost all my emails and login details to access these. I feel like such an idiot but I had to ask for them to be sent over again ... needless to say the last time I lost them all, YFC_J said to me ‘anything anytime’ is not too much trouble for him … so here goes again …

What’s New …

Since my last session with YFC_J I have been extra unwell. Having PEM from just breathing. I am so poorly right now I have no idea how I will ever recover to any kind of level of ‘doing’. I feel as though I was unwell enough prior to this episode but now I have no idea how I will get back from this.

I want to cry all the time. The pain is unbearable. I just want to be heard, loved and cared for.

I so need, and I deserve, to feel better than this …

What’s Important …

As poorly as I am, I am still feeling extremely hopeful and rather excited to start this part of the programme. To actually stop and listen to my body will be novel for me. But is something I really want to try to do. I feel it is an act of love toward myself.

The Active Stabilisation Session (1) …

The session started as usual with a mini catch up. Then we went straight into the depth of things.

My internet was appalling and so I missed a few bits but it didn’t completely give out until the end of the session. thankfully …

We discussed so many things, including but not exclusively, noticing tensions and being ‘easy’ with them, breathing slowly over large deep breaths along with real active resting and gentle kindness towards myself.

We also discussed the dysregulation of the nervous system and how eventually you live in a state of hyper vigilance. Imagine always being in the flight or fight state. No wonder I feel so exhausted all the time.

These theories and informations are not new ideas to me, I’ve come across them plenty before, but never have I had them explained to me properly or maybe I should say in the terms of their relationship with ME’s dysregulation aspect.

We discussed in detail how I might get some ‘ease’ into my being unwell and into my resting too, in order to maybe help me get a less adrenalised sleep.

sounds wonderful … but feels mountainous …

I do have some ideas on how I might implement this … and I do feel very determined.

Below are some of the ideas we discussed:

    • the CNS and it’s role in ME’s dysregulation
    • how to relax ‘easy’
    • how to breathe ‘easy’
    • how to be ‘easy’
    • how to ‘let it go’
    • be kind to myself

These are definitely things that I already knew but now is my time to actually do them, with kindness and out of love for myself.

After The Active Stabilisation Session …

I had been extremely unwell at the start of the day and had to spend around 3 hours resting and doing absolutely nothing prior to the appointment. And although I lay down and tried to be easy throughout the session I still managed to trigger way too much adrenalin and so I couldn’t keep the physical tension, the sweating, and the headache at bay.

I feel really poorly right now … and aiming to re-regulate my dysregulated system seems so simple in theory but I know how majorly difficult it will be for me to implement.

The Here & Now …

I felt incredibly unwell and sweated so much I had to change my PJs.

I feel really poorly right now … and I need to cry …

The Day After …

I had insomnia last night, which seems to be a pattern after these appointments. I probably have to trigger so much adrenaline to engage and come sleep time it’s still flooding my system.

I finally slept … but not much … 3 hrs 25 min and 0 deep sleep.

08.07.2021: bad day * full on migraine … I will be back soon …

10.07.2021: So the day after I felt dreadful and slept in the bed a lot of the day. I did start the programme of trying to check in with myself several times and breathe slowly trying to release tensions and let things go. But the heart rate was high and the tensions strong.

I finally, today feel as though I’ve got over the appointment.

Today I’m being easy … in fact everyday from here on …

… I’m being easy …

What Next …

The goal is to be very ‘easy’ about what I’ve been asked to do …

The plan is to use the knowledge I now have about the CNS and dysregulation in ME along with some techniques if noticing tension and actively relaxing myself through release and long slow breathes. I am to do this regularly each day and aim to build from 1 minute or so several times a day to longer and longer many times a day.

bring it on …

I will document as much information as I can in the next blog post in ‘my healing journey’. Please be aware that any information I share will always follow data protection guidelines and will never be enough for you to substitute it for your own programme

Can You Help With Costs …

Please go to my ‘fund my healing journey …’ page to donate.

 fragmented.ME xXx

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰