fragmented.ME …
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catch up : 23.08.2021 …

Fortnightly Catch Up 23.08.2021 …

Dear Lovely Followers, I am sure you will have noticed just how poorly I have been of late. How I’ve not been as present on writing my blog posts too.

In truth, I don’t think that I have ever been so poorly and for so long.

Here’s hoping to, and for, better days … pretty soon.

Don’t forget whenever you see MiA … it means I have been unable to journal anything on that day due to serious illness or just because I was unable to do anything, except keep my head above water, on that particular day.

What’s New …

I’ve hit a new level of poorliness and I’m beyond devastated and I do not know yet if this is my new normal … I think it probably is …

In the depth of my despair at getting even sicker I needed to address it and also express it. However, given my limited resources whatever I did had to be easy, small, and use as little resources as possible.

Enter haiku for healing …

noun
noun: haiku plural noun: haikus

    1. a Japanese poem of seventeen syllables, in three lines of five, seven, and five, traditionally evoking images of the natural world.
    2. a poem in English written in the form of a haiku.

Origin Japanese, contracted form of haikai no ku ‘light verse’.

And so, I’ve been spending short moments of time trying to get my thoughts and feelings down without using vast amounts of energy by means of ‘haiku for healing …’.

I do hope you enjoy them!

What’s Important …

On reviewing my previous days to this massive crash, with hindsight, I’ve noted that I’d been trying to stretch and do prescribed stretches and moves for my upper back and my frozen shoulder. I’m now wondering if this is what triggered the crash.

It may not seem like much. It actually doesn’t feel too bad when I do them neither. But clearly for my poorly body it is too much. So, if / when I get back doing them (I need to do them due to the levels of pain and lack of flexible stretch I’m having), it is going to be a fraction of what I was trying to do, which wasn’t more than 7 minutes a go.

and so I ease back to doing nothing at all … again …

After chatting about this with YFC_J we have decided, yes it is important for me to ‘move’ but that I start with one stretch, once a day, for a week or two, and then add another, once a day, for another week or two. I’m sure you get the picture. Eight stretches, five to ten times each, twice a day, is too much for my level of sickness. Easy does it …

Diary (09.08.2021-22.08.2021)

Monday …

WoW no migraine, just a bad headache. I spent the morning updating and catching on the blog.

Let’s hope this doesn’t push me into another migraine tomorrow. I really need a break.

Tuesday …

MiA … I’m feeling utterly terrible … again …

Wednesday …

MiA

Thursday …

MiA … Today I’m having my session with YFC, you can read about it in this specific ‘my healing journey …’ blog post. I’m not doing too good still and so writing it up / updating it may be a little longer than usual.

Friday …

MiA … ooooooops everything I discussed yesterday with YFC_J I failed to do … I started my day in automatic mode … again …

tomorrow is a new day … and it’s all ok … and I will get there …

Saturday …

MiA …   M I G R A I N E   A G A I N   . . .

Sunday …

Today, I have started to aim 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 to support me in doing this. I will be aiming to do this by randomly picking a card and working with it. Cards will be chosen daily, but I may use a specific card for a few days or more; as long as needed.

As well, some days, I will share them with you here. Today’s card felt scarily appropriate. It was selected at random, which makes it more profound.

CARD 18 (front): The Mahayana instruction for ejection of consciousness at death is the five strengths: how you conduct yourself is important.

CARD 18 (back): 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.

Today, I am poorly but very determined …

Monday …

MiA …   M I G R A I N E   A G A I N   . . .

Although my medications seemed to work I took a very kind and easy day towards and for myself.

Tuesday …

Today, I had a bath and washed my hair … it floored me and made me cry. I can’t tell you how scary it is to lay there and think ok I think I can do this and then feel like you’re dying after doing it.

I cried so much …

Then in the early evening NICE announced the following …

The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.

Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.

NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.

We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.

In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.

I feel beyond devastated about this. I have emailed NICE and will share the email and any response later this week.

Wednesday …

MiA

My letter to NICE (sent Tuesday 17th August, 2021) …

Dear NICE (or maybe not so nice),

I am writing to you to express my sheer and utter disappointment that you appear to be allowing the medical profession to question the guidelines that you have come up with relating to my condition ME. ME/CFS, which you will no doubt realise can be so severe that when a patient is treated incorrectly they can die. And, on a personal note, those so called professionals that forced the most famous, for want of a better word, two ME patients to do GET and then left them to die, in my opinion, these precious people were murdered by the medical professionals who got it wrong and today are still getting it wrong. You, NICE, need to stand up to them.

I have been ill with ME since 1983-84, and was fobbed off and messed around until 2001 when I was finally diagnosed. However, this was much too little and too many years too late. To be told I now needed to learn to live within my new means.

Except for a few blood tests and some CBT, from which I was appallingly discharged due to rearranging too many appointments and told once I’d fixed the problem I might be allowed back! Read that again … yes I was sent to them for a condition that they used against me in order to discharged me. And then said when I fix it I may be able to use their services, which I obviously won’t need if I could fix the problem.

I am now severe and cannot even take a bath weekly, or cook, or look after myself. I have absolutely no medical care, unless I pay. With what? I cannot earn. I have been discarded and abandoned so many times by the medical professionals I went to for help, and my only hope was in the new and better ‘fit for purpose’ guidelines. Yet, now I feel abandoned all over again.

Please, please do the job you are paid to and publish the guidelines that you have come up with in the your investigations spanning over four years and tell the NHS and other professionals their job is to comply with them not behave like naughty children and try to sidestep their responsibility because they appear to be, or feel, powerful against and over the poorly and the very very sick.

I trust you will read this and respond too because my heart is breaking at the thought of another letdown by those I put my trust.

~ denise ~
~ fragmented.me ~

Live with Passion 🌻🌻🌻…

Their response (definitely a standard letter that they sent to every single person who wrote to them regarding this matter) (also this was not received until Monday, 13th September, 2021) …

Dear Denise

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding the pause to the publication of our new guideline on the diagnosis and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome.

We are aware that our decision to pause publication has been difficult for people with ME/CFS and their families. However, we really want to ensure that the guideline makes a difference for patients, and unfortunately a pause to publication was necessary in light of feedback that we received from some key groups.

Changing clinical practice and clinical attitudes is one of the most challenging parts of our role. To make a real difference, guidelines need to be supported by all relevant stakeholders, so taking some extra time now to bring everyone together is an important step.

A roundtable discussion will be held in October to better understand the issues that were raised, demonstrate the robust way the guideline has been developed, and determine how we can gain support for the guideline to ensure effective implementation. The meeting will have an independent chair and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee.

I would like to assure you that we recognise the importance of the new guideline for patients and their families, and we are committed to finding a way forward to publish a guideline that will have the support of people living with ME/CFS, the people who care for them and the professionals who treat them.

Kind regards

J****t

Thursday …

MiA … M I G R A I N E   A G A I N   . . .

Trying to be kind, easy and compassionate with myself.

Friday …

MiA … M I G R A I N E   A G A I N   . . .

Saturday …

MiA … M I G R A I N E   A G A I N   . . .

Sunday …

Still very poorly but think I might be recovering. I’ve taken vitamin B9 (folate) for four days now, maybe soon it will work …

 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. 🥰