my healing journey : Step : 20.09.2021 …

My Healing Journey 20.09.2021 …

Active Stabilisation Session (3) …

I pre-booked this session the minute I finished the Active Stabilisation Session (2) …, working it around YFC_J afternoon availability and leaving enough time for my recovery, which never seems to happen these days.

I am eager to keep going with this part of the programme, it feels like we are very much getting down to the nitty gritty of my personality right now.

Preparation & Setting Up …

As soon as I received the bill from my active stabilisation session (2) I also received the details for my next appointment, we have decided to use telephone for now as it suits me much better. 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. I am so happy with all the adjustments that had been made to personalise things form just me and my ME.

What’s New …

Since my last session with YFC_J I have continued to be very unwell. Having PEM from just breathing and eating, which is making me extra unwell.

I feel so poorly that I am scared and have no idea how I will ever recover to any kind of level of ‘doing’. But, YFC_J reassures me that I may never be 100% well again but I can find my equilibrium again. I sincerely hope so.

I still want to cry all the time. The pain is unbearable and the nerve pain I am getting is unsettling and bring anxiety to the fore. I just want to heard, loved, healed and cared for.

However, I realise now that how I am feeling is understandable and to be expected. The illness is so unjust and such a messer of the mind that it’s no wonder I feel as I do.

It is ok and I love you 🤍💙🤍 … never forget 🐘

What’s Important …

As poorly as I am, I am still feeling hopeful and rather excited to keep doing the new parts of the programme. To actually stop and listen to my body and then be kind and encouraging 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.

My programme plan from the previous session was: (this was devised by me, for me, because without it I will keep reverting back to the old automatic me) …

• • to start my day much more kindly …
  • to continue like this throughout the day …
  • remember to be kind to myself …
  • and to encourage myself …
  • and to ‘be easy’ with everything (this means really absolutely everything) …
  • *** be easy …
  • *** be kind …
  • *** be compassionate …
  • *** patient …

How / What Have I Been Doing Since My Last Session …

I would like to implement the previous session into my daily living firstly by changing my ‘bossy / harsh’ inner chat to a much more ‘kindly / compassionate’ inner chat. I would like to become more supportive towards myself with plenty of gentle and easy expectations.

For example: encourage myself rather than tell myself I don’t get a choice and I simply need to get on with it.

#day 1 (13.08.2021) : I failed … I forgot who I want to be and was just me again. It was hard because I’m so used to pushing and I didn’t realise, that I had behaved exactly as I always do even though I intended to be different, until the afternoon of the day. But, I can and I will do this. Tomorrow is another day and the rest of today still has opportunities for kindness and encouragement.

Despite my initial failure, I won too. For our lunch, we bought a takeout sandwich from Jan’s Lakeland Sandwich Bar. I have a sundried tomato & cheese ciabatta with chicken mayonnaise, tomato, lettuce, and sweet corn, which is a big ass kind of butty. So in order not to overburden my digestion and ask too much from my poorly body, I cut it into four and ate the four sections throughout the day and I was able to digest it without over burdening myself.

I also did one stretch / move for my frozen shoulder.

After a nonstarter, I did fantastically well this afternoon.

#day 2 (14.08.2021) : M I G R A I N E   A G A I N   . . .

#day 3 (15.08.2021) : Today, I have started to train myself to be more open to what I am experiencing and then offering compassion to myself. I am using the Compassion Cards by Pema Chödrön by randomly picking a card and working with it. Some will be chosen daily, but others I may use for a few days or more; as long as needed.

The Mahayana instruction for ejection of consciousness at death is the five strengths: how you conduct yourself is important.

When you are dying, practice the five strengths (based on becoming very familiar with them while you are alive).

strong determination: open and let go when the appearances of this world start to dissolve.

familiarisation: practice opening and letting go throughout your life so you will not panic as everything dissolves at death.

the positive seed: trust that you will have the innate ability to let go and feel compassion for others.

reproach: realising that this limited identity isn’t solid and it dissolving, do not indulge in trying to keep it from falling apart.

aspiration: at death, aspire to spend all your future lives in the presence of your teachers and to do your best to benefit others forever.

#day 4 (16.08.2021) : M I G A I N E   A G A I N   . . .

But, for what feels like the first time ever my tablets are working. I have take 3 kinds at alternate 2 hour timeframes … but they’ve worked to keep the pain low and the neurological symptoms manageable.

Today I sent my privates blood back. I don’t expect miracles, but you really never know. RESULTS: low normal on everything except folate (B9), which is extremely low. So I’m starting ‘5 MTHF Methylfolate 1000 mcg’ supplementation.

The rest of the day was spent at ease using breathe and relaxation prior to any activity.

#day 5 (17.08.2021) : today has been a really difficult day. I had to have a bath and wash my hair. It’s been well over two weeks again since I last did it. I thought I could managed but I couldn’t.

Also, on a personal level NICE have postponed their new ME guidelines. Their reason is an absolute joke and this news has really made feel really me unwell.

medically induced post trauma I think ….

#day 6 (18.08.2021) : MI G R A I N E   A G A I N   . . .

#day 7 (19.08.2021) : M I G R A I N E   A G A I N   . . . this really is not living, I actually feel barely alive … BUT, I am trying to be kind, easy and compassionate with myself.

#week 2 (25.08.2021) : having too many migraines right now to be anything but kind and compassionate to myself …

I am struggling so much but I do think the folate is making a difference. That said, I am not great, just maybe a bit better than I was.

I walked up the stairs of my boy_2’s flat, only 2 flights, and hoovered a small bedroom, tiny bathroom, kitchen and lounge two days ago and now I just can’t get back to where I was. I hate hate hate this illness and its devastation.

#week 3 (01.09.2021) : I am impossibly unwell right now and cannot be anything but kind and accepting towards myself. That said, I do not feel any better for being kinder to myself …

#week 4 (08.09.2021) : what a shit time I am having of illness right now … I don’t seem to be getting back to my previous levels any time soon …

#week 5 (15.09.2021) : I have not been great at all …

The Active Stabilisation Session (3) …

Well, I missed, or more precisely I forgot, my appointment. But maybe, for me, this is a good thing because it means I’m being more accepting of my illness and as a result kinder and less regimented.

In the session we discussed if I have managed to be kinder to and more compassionate with myself and build on the resting periods from the active stabilisation session #1.

I have not been consciously working on any of these much but after chatting with YFC_J I realise that I have been doing this because the actions and changes I have made show this.

I have also realised that I have a lot of frustrations and anger regarding how I have been ‘seen’ and ‘treated’ previously in relation to the ME/CFS.

After The Active Stabilisation Session …

I felt worn out and had a list of things to do BUT I decided that I would close the blinds, put an eye mask, and treat myself to a rest and recovery sessions.

I feel this was an act of love and compassion towards myself.

The Here & Now …

I was too unwell to add anything yesterday.

So, today, the following day, I had a bad bad night and sweated all night long. I had very poor sleep. Sweated all night. So today I feel exhausted and am easing up on myself again.

The Day After …

See above …

What Next …

I aim to implement daily ‘rest and recover’ sessions. Get back to daily acupressure mat and sensate (vagus nerve stimulation). And be very kind towards myself.

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