fragmented.ME …
my healing journey ...

my healing journey : AF : 27.04.2021 …

My Healing Journey 27.04.2021 …

Assessment & Formulation Session …

I booked this session on the same day I finished The Introductory Workshop … but I had to work it around getting over the workshop and some dental extractions I have booked in for the second week in April. Hence, the size of the gap in-between the two sessions.

Preparation & Setting Up …

A week before the assessment I received a small questionnaire and the zoom login details for my appointment.

The questionnaire simply wanted some personal details and for me to score my ability in some areas (see below).

AF : 27.4.2021 ...

The system the YFC use for secure emails is really messing me about and so I had to ask for an insecure link to my zoom meeting.

Do you know what, today I am questioning if I may be too poorly to even do this programme.

I am exhausted and cannot do anything that requires extra thought or extra physical work. I’m very close to giving up.

What’s Important …

The appointment is 90 minutes long, which is going to be extremely difficult to do. I raised this beforehand with my assessment person and they said it could be done in two halves or even three separate appointments if I need to.

The cost is £141 and I expect it may be more expensive if we split the 90 minutes up into two or three separate appointments.

Because, I still haven’t recovered from my dental extractions of two weeks ago, I expect I may need the extra breaks or splitting the appointment into three separate ones. That said, I will see how it goes because it’s all money money money and we don’t have an unlimited amount.

The Assessment …

On the morning of the assessment I woke at 04:00 with a blistering migraine. I got my migraine cap, took a syndol and a cocodamol, and went back to sleep. I woke again at 06:00 still extremely poorly, got another migraine cap, and took three aspirin, and went back to sleep again. I then woke again at 08:00 still very poorly, got another migraine cap (I’ve only got three so that’s it’s now, they’ve all been used and they don’t refreeze that quickly), and I can’t take anymore pain medications until 09:15. I tried to fall back asleep but I couldn’t. I got up at 09:00 and sat downstairs, with all the blinds closed and the patio door open, with a semi frozen migraine cap on, and at 09:15 I took two cocodamol.

Not the best start to an assessment day.

I fitfully drifted in and out of sleep until 12:00.

And at 12:45 I got up off the settee, got a latte and a French Earl Grey tea and logged into zoom on my iPad.

Oh and just for the fun of it my assessor has a student with him. Not sure why I always, and mean always, get bloody asked if a student can sit in. But it seems like I do. I didn’t say no, I allowed it. We all have to learn and she was lovely and sweet anyway.

The Practitioner(s) …

My practitioner is YFC_J (I’ll call him this for data protection purposes) and he had a lady student with him. Both, we’re very nice, and easy to chat with. Professional but approachable too. YFC_J took plenty of notes and asked lots of clarifying questions. He also gave me some extra useful information around which anti histamines I should take and orthostatic intolerance too.

It was incredibly nice, and fairly easy, to be able speak to somebody who didn’t doubt a word I said, and actually totally got it too.

The Appointment …

The appointment was on zoom and lasted approximately 1 1/2 hours with a small ten minute break half way through, which I needed. I wasn’t charged any extra for this break neither. My internet was a bit rubbish and kept freezing so I expect I missed a few things. But all in all, it went fine. It was semi informative, which I didn’t expect on an assessment, so that was good and useful, but mainly historical information taking.

Basically, in a nutshell, it really was a history taking of all my problems, symptoms etc. Of where it all started through to where we are at right now.

It was difficult to hear myself explain everything I suffered. It feels like I’ve had a very shit time of things. And when it came down to the personal stuff I got a bit upset a few times. It’s so embarrassing to discuss self care when you have none.

It’s hard to hear yourself say. I get up, brush my teeth if I can, come downstairs and lay on the settee, watch an hour or two of TV towards the end of the day and then go back to bed to do it all over again the next day. And I still wake up really unwell day after day of doing not a lot.

I Felt Heard …

I really do have to point out that, I felt heard. Even though it was a history taking exercise, I still felt proper listened to and unquestioned in a ‘I don’t believe it can be that bad’ sense. I know, I would expect to be heard because we are paying for it, but I felt more than heard I felt understood, believed, and accepted.

My assessor YFC_J might even know more about my illness that I do. And that has to be a first when it comes to my medical care.

After The Assessment …

My adrenaline is running high. My head is banging. My eyes hurt. But I feel glad we made the move to pay for the treatment. I was adamant that I ought to be entitled to it on the NHS and extremely reluctant to paying for it. But, I can honestly say I’m pleased we did it.

The Assessment Letter (important part only) …
Summary / Formulation:

You described the onset of symptoms around 36 years ago and since then have had various levels of health and other health issues that have added to symptoms. In recent years, your general health and function has deteriorated, with likely a combination of factors contributing to this.
You have had a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS confirmed and the symptoms you describe meet the diagnosis criteria for this diagnosis. However, there are also various other conditions which are likely contributing to fatigue and general difficulty in regulation of your body including chronic migraine and fibromyalgia.
The symptoms you have described also suggest orthostatic intolerance that may be to the level to be considered Postural Tachycardia Syndrome (POTS), although this would need further investigation to be confirmed, and particularly given the history and possibility of SVT and the overlap in the presentation of these conditions.
The reactivity you have described to foods and other substances also seems reminiscent of conditions such as Mast Cell Activation Syndrome. I briefly explained this condition and possibility to you and the difficult in confirming the diagnosis.
Given these various factors it is clear that your body remains in an ongoing dysregulated state, and you have struggled to achieve any stability. Being unable to eat regularly or sufficiently may also be a contributory factor with your body potentially lacking the regular necessary fuel, but you unable to provide it due concern about vomiting.

Plan:

You have already attended our Introductory Workshop which gives further information about the condition and the therapeutic approach. I have booked to complete your assessment process with a care planning session. This will enable us to discuss your suitability for rehabilitation and agree appropriate goals for treatment.
As you are already using antihistamines to manage your nausea, but are struggling to obtain them, I suggested that you could try alternative antihistamines and advised that there are also H-2 receptor antagonist antihistamines which could be considered as these are considered more directed toward gastric symptoms – if available over the counter or in consultation with your GP.

The Here & Now …

I feel really poorly right now and emotionally drained too. I am writing this straight after the appointment.

I feel rather sad and I don’t want to think about it all. Normally, I kind of shove all my feelings to the back of my mind but talking about them and how poorly I feel every single day has been incredibly sobering. I am sad about being this poorly and not having much hope that things can change for the positive. What I do realise is that things can go downhill rapidly if I carry on as I am doing.

The Day After …

The day after I am seriously poorly. Bad headache, sweating, muscles quivering weak and depleted, unable to stand. I have to just lie flat all day.

The dental extractions I’ve had two weeks ago have really flared up today. So, it’s back to the dentist to be checked. Just in case I needed antibiotics, which I didn’t. The bottom extraction was cleaned out and packed last week. This visit, the top extraction has been cleaned out and packed with a medicated packing. They both had dry socket, which I’ve had before, and both had small amounts of infection too, but not enough to need an antibiotics. I have to go back next week to keep an eye on things.

Fed up.

Poorly.

Can’t keep feeling this unwell.

What Next … 

YFC_J will write everything up (see above for some of the important bits from evaluation) and work out a care plan to discuss and formulate properly in our next meeting.

Once I receive his write up then I have to go through what’s he’s written and if anything is glaringly wrong I let him know and he changes it.

The overall plan is to take things very slowly. And so my next appointment is 01.06.2021. This suits me perfectly. I’m too poorly to move fast.

I have booked my care plan appointment for 1st June.

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. 🥰