More than three weeks ago my new advocate sent the following letter to my G.P. (family-doctor) and a copy to my social-worker. This includes details of my deteriorating suïcidal-ideätion. Neither my advocate nor myself have heard anything. I did however note that my anti-anxiety medication was increased by 50% when my last medications were delivered in blister-packs just over a week ago.
Safeguarding is a legal requirement in England & Wales, but it appears - at most - it is only paid lip-service. Responsibility is given to the police who have been contacted on several occasions since last December. Nothing from them either (bar a visit in the wee-small-hours several months back due to a call from the public). In the past week I went 72 hours without food or drinks, because my housemate forgot about me. I have no social-care as my local authority, Trafford Council, withdrew its services.
I struggle each and every day about continuing to remain. Almost everything causes me to stress &/or panic. I am inexorably withdrawing more and more from life. I am diminishing. I really do not know how long such fortitude can last…
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June & July 2023
Dear Dr. [G.P.],
I have been writing this over the past six to seven weeks. As you no doubt recall, it takes me a long time to type and thinking clearly is often impossible or very difficult.
DREAMS
“I am in a dark, cold, damp, steep-sided valley. My companion and myself are traipsing slowly along its course.
I turn round to see my friend has stopped. He is a couple of hundred metres behind me. Suddenly an inferno, like a pyroclastic-flow, shoots down the valley. I call out to my friend to take cover or aim for higher ground. He turns to glance at the impending doom. He looks back at me and stands his ground. I repeatedly plea for him to move to safety. I watch as he is immolated.
At this point another friend appears in a truck and goes shooting past me along the gravel track. I follow as the vehicle speeds down-valley. I note that the trackway veers sharply, almost perpendicular, from the valley-floor and thus away from the impending hellfire. However, my friend does not take the safe pass. Instead he drives his truck over the cliff-edge at the end of the valley. He is killed in the resulting explosion.
The fiery doom follows, sweeping over the cliff.
Then darkness. And cold that chills to the bone. Drizzle soaks through my clothes. And I am alone in the silence.”
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This is typical of the vivid dreams I experience almost daily. I awaken drained and shaken.
SUICIDAL IDEATION
I am plagued throughout each and every day with thoughts of suïcide &/or of friends’ deaths (both loved ones who have actually died and those who are very much alive) &/or my own dying experience. My suïcidal ideätion has not been this bad since the late 1990s. Indeed, prior to the Trafford Re-ablement Team taking over my care, I have this century rarely thought about suïcide other than for end-of-life/living-will purposes. I did warn that I feared my state-of-mind would pejorate if not dealt with.
SAFEGUARDING
Despite apprising yourself, my G.P., Dr. [redacted], my consultant, the Re-ablement Team, Trafford ASS [Adult Social Services], the CEO of Trafford, the Leader of Trafford Council, and all three [redacted] local councillors about my suïcidal thoughts, none of you took any action. This added to the individual & collective failures to act to ensure I was appropriately fed, watered & medicated, has left me untrusting of those who ought to be safeguarding me. I contacted the police. They also failed to act until an anonymous member of the public contacted them. They visited once. I have heard nothing since.
HOUSEMATE & FOOD
My housemate is unable to remind me to take medications and 2-3 times each month omits to feed me my one meal per day. Indeed, he is now struggling to even prepare & cook meals.
HYDRATION
I rarely get adequate hydration. (The hydration-system has not been used since your visit in May - as I cannot fill it and no-one else recalls to do so - nor from December 2022 to March 2023 incl.)
MEDICATION & AFFINITIES
[Redacted], my advocate, & [redacted] (my friend & ex-boyfriend) have admirably and reliably video-called each weekday & weekend morning respectively. However there was a fortnight’s delay in supplying the prescriptions as the surgery & pharmacy bounced the prescription from one to the other, neither treating the matter with any sense of urgency.
I only take one dose of the phosphate as I should require to be reminded in the evening to take the second dose. Because [housemate] never knows when he is going to be at home, mealtime is any time between 18.00 - 21.30, no-one would know when to call to prompt me to take the med. In any case, I am causing my good friends sufficient trouble without adding further obligations. Furthermore, such would deleteriously affect the dynamic of my affinities.
SYMPTOM IMPROVEMENTS
Benefits of taking the meds include the ending of body-jolts during sleep, a massive reduction in visible body tremors/shaking and a reduction in low-grade fevers & drenching sweats. Now the tremors/shakes only occur when I am excessively tired mentally/emotionally/physically.
MIGRAINES
I did not have a single migraine from 30th May to 27th June inclusive. This is the longest migraine-free period since early 2020. I had five migraines over the period 1st to 7th July, but none since - that’s tempting them! Ha ha One of those migraines was the third or fourth time I have had to take a second tablet, but then it slowly resolved.
HR & BREATHING
My resting heart-rate has dropped from high [redacted] to typically [redacted] bpm. This is closer to where it was a couple of years ago per the Fitbit records. My heart-rate variability remains unchanged within the range [redacted] ms, with one exception. My breathing-rate has increased from [redacted] to [redacted] breaths-per-minute since medication recommenced.
SLEEP
My sleep pattern is still non-existent, but I am gradually cumulatively slumbering for longer each day (in a directional perspective - day by day is still totally erratic).
SYMPTOM DETERIORATIONS
The muscle-ticks, spasms & pulses have increased frequency and duration. Oddly, cramping has also increased. I have mouth-ulcers most of the time now. I feel really run-down. The M.E./F.M. “poisoning” sensation is more acute. I have constant toothache - in different places in my jaw. Previously my dentist advised this was related to the M.E./F.M. (I remind you that I have not seen a dentist since becoming so badly bedridden and that arrangements need to be made for a home inspection.) There has also been an increase in neuralgia in my cheek/jaw, again not in the same spot each time. Paracetamol has been sufficient to deal with, so I do not consider these attacks are migraine-related. Additionally, this year my hay-fever cum perennial rhinitis has been at its worst since the early [redacted]. Whilst I generally have throat issues during Autumn/Winter, these have continued which means sore throats, swollen & hardened glands, hoarseness and voice-loss. Previously these latter would be “morning” phenomena, but they are now occurring towards the end of the day as well.
CBT
I no longer have a “happy place” to take myself to in a meditative manner. If I ponder on happy events from the past, I quickly recall the negative consequences or subsequent events or how an affinity ended. The CBT techniques I was taught and have implemented since the late nineties, no longer work for me.
PROGNOSIS
My present feels hellish as I am all but trapped the vast majority of the time in my bed-cell and can no longer participate in my hobbies (until the change in regimen in August 2021 I was still regularly doing genealogy, learning Portuguese [my 5th language], creätive-writing, cooking, etc.). I no longer can see a future for myself. My condition has, despite shorter periods of amelioration, been following a constant deteriorating, downwards projection. From Severe ME the route can thus only be Very Severe ME. I cannot imagine anything more horrific! Whatever option to improve my situation that I creäte in my mind’s-eye rapidly degenerates into impracticality and impossibility.
DESPAIR
Even the little things that used to give me joy such as birdsong, the pattering of rain or children playing, all now jar: the avian chorus pierces my ears due to a worsening of the hyperacusis; the dampness aggravates the arthritides; the children’s screams cause my heart to jolt and panic.
FINAL REMARKS
So, in short, I am no calmer and my mental/emotional/spiritual states are on a downward trajectory. I hope this report of the past six weeks or so is what you are after. I am sending it to you via [advocate]. Let [them] know if you need any other info from myself.
Sincerely,
Colin
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