fragmented.ME …
my healing journey ...

my healing journey : Step : 12.01.2022 …

My Healing Journey 12.01.2022 …

Active Stabilisation Session (5) …

I pre-booked this session the minute we finished the Active Stabilisation Session (4) …, working it around YFC_J afternoon availability and leaving enough time for my recovery, which never seems to happen these days. This time we left six weeks break.

I am still eager to keep going with this part of the programme.

Preparation & Setting Up …

As soon as the active stabilisation session (5) ended, I instantly received the details for my next appointment. We’re sticking with landline telephone calls for now.

What’s New …

Since my last session with YFC_J I have been trying really hard to have rest & recovery while also compassionately accepting the grief involved with the huge loss this illness forces upon you. It’s very hard.

the stages of grief are:

    • denial …
    • anger …
    • bargaining …
    • depression …
    • acceptance …

Presently, I feel as though I have definitely been through them all a few times already, but I think I’m doing the rounds again. I think that maybe I am dealing with shock on a daily basis because every single day I wake up half expecting to be recovered and somehow feel shocked at the levels of illness I still feel and that I am still alive. You’d think I would have come to accept it by now or died.

What’s Important …

It is very important to know that I am having a really bad time right now and that instead of stabilising I seem to be getting worse by the day.

I cannot do anything without paying a huge price … I went to the doctors for some monitoring bloods on a Monday and was still paying the price by the Sunday … this is so hard to accept …

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

Considering the ever growing list of ‘to dos’ for such small wins I feel that I am doing ok really. I guess feeling like I am actually doing something, by daily ticking things off my lists, helps me feel like I am achieving things even if I am not feeling any benefits yet.

See below for additional notes and weekly diary.

    • rest & recover : using my ōura ring app to advise me of when / if I am achieving this … hopefully it’s accurately feeding back to me.
    • acupressure bed : starting again after stopping is difficult, but I’m getting more regular each week.
    • stretches : not done a single stretch.
    • migraine device : I’m struggling to start this one.
    • sensate device : I have an aged to use this twice most days, sometimes more, and I think my resting heart rate is dropping. See below for more details.
    • compassion work : sorted out the kindle books I own into a folder to help me get working on this stuff.
    • grief work : sorted out the kindle books I own into a folder to help me get working on this stuff.
    • fluid intake : excellent …
    • electrolytes : excellent …
    • small regular food : I’m doing well on this one.
    • relaxation / meditation sessions using my ōura ring app : improving all the time.

I thought I would include a mini weekly breakdown of my achievements, or not …

#week 1 (22.11.2021-28.11.2021) : this week, I have sorted out all the relevant kindle books into folders in order to make getting a start easier. I have also done excellent work on drinking more fluid, I bought apple and blackcurrant electrolytes and a variety of waterdrop® drinks, which has made increasing my fluid intake much easier.

#week 2 (29.11.2021-05.12.2021) : a new week to start afresh … let me see how much I can manage before I crash and cannot do a thing … started the week with a RHR of 74 and ended the week with a RHR of 68 (not bad, I think it’s the sensate device). I’m now watching my HRV because the sensate is meant to improve it. This was the week I went for bloods on the Monday and still by the end of the week I am paying a heavy price. All I did was get dressed, which I don’t usually do, my husband drove us 3 miles and I waited ten minutes, then came back and got back into my PJs and lay flat. But the price I’m paying is still increasing daily. 🙁

#week 3 (06.12.2021-12.12.2021) : another new week and I’ve woken up so poorly I’ve no idea why or what I’ve done. So, I’ll not be starting again as I usually do … maybe tomorrow will be this week’s Monday. Nope, it was not meant to be, Monday is postponed this week. There are no new starts or keeping on track, it’s all cancelled as I am just too poorly to even try. This week has been a total write off.

#week 4 (13.12.2021-19.12.2021) : a new week and I’m still not moving forward … this is soul destroying … this week just disappeared before my eyes … however, I did get some new self-compassion cards, which I think I’m going to do one a week starting January … I will document this here and in my monthly diary.

#week 5 (20.12.2021-26.12.2021) : another week given over to severe illness and migraine and pain … plus I have regular illness, which is like omicron but I’ve tested negative every time I’ve tested so it must just be a regular cold virus. 22.01.2021 : had a phone call from my surgery saying my referral to YFC (so I no longer have to pay) has been deferred pending further information. This is not bad, just frustrating, and according to the lady I spoke to she feels there’s a good chance of it being approved.

#week 6 (27.12.2021-02.01.2022) : another week lost …

#week 7 (03.01.2022-09.01.2022) : another week lost but I have determined that grief work and self compassion are not necessarily where I need to start, I thin’ I need to work on self care. However, I guess they are all interrelated and overlap but one category might be much easier for me to get my head around.

#week 8 (10.01.2022-16.01.2022) : another week of utter despair … my appointment with YFC_J is Tuesday this week and it feels like a lifetime away and yet I’ve done nothing at all really …

The Active Stabilisation Session (5) …

The session went in full on. I was moaning and going on about this and that. Buy YFC_J did his best to keep me focused on what was needed.

He helped me see:

    • I need to be more compassionate
    • keep having very small meals and focusing on my digestive limits
    • make a sheet of my needs and requirements in case I need hospital treatment
    • set up an ongoing annual review with my GP
    • try to get in place home visits from GP for when is necessary
    • loose the self judgment (my words not YFC_J

After The Active Stabilisation Session …

I cried during the chat. I feel so embarrassed by being this sick.

My husband said I look positively exhausted after it.

The Here & Now …

I feel so exhausted and emotional. Yet, I also feel it was a very good session and I’ve got plenty to work with.

The Day After …

Too poorly to even get out of bed …

What Next …

I will endeavour to work compassionately with the illness whilst also making progress. This is difficult because everything feels fragmented due to not being able to ‘live’ on a daily basis.

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. 🥰