All Lives Matter to G_d

[Image description: a US American white, male & female couple hold a placard which reads:

Christ & Racism

- DO NOT - mix.

You can’t love God &

Hate His Creation ]

This sign from last year´s Black Lives Matter campaign could equally state:

Christ & Disablism (US Ableism)

- DO NOT - mix.

You can’t love God &

Hate Their Creation.

Sexism, Racism, Homophobia, Ageism, etc. have no place in Christianity. If you believe they do, you are no true Christian. Jesus made it crystal-clear that after loving G_d, the next most important commandment was to love one another. He himself averred that he came to fulfil and thus replace the Old Testament (OT), so there is no justification for quoting scriptures out of context. To be quite clear: There is NO place for hate, treading in the steps of JC!

Black lives matter.

Asian lives matter.

Disabled lives matter.

Wimmin’s lives matter.

LGBTQIA+ lives matter.

Senior citizens’ lives matter.

Poor, working-class men’s lives matter.

If you do not understand why any of the above groupings are suffering in British (or US or Oz) society, then do some research - the internet is full of personal stories, histories from differing perspectives and data for those interested in statistical analyses.

We all have our own prejudices. The path of Faith calls us to to challenge ourselves and learn to stretch out the hand of amity, of friendship to all, not just those who are like us.

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Peace & blessings! 🙏🏻

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One PwME’s Covid-19 Vaccination Side-Effects

Last Thursday morning, a peripatetic nurse came round to give me my first shot of a Covid-19 vaccination. And I was thrilled to bits. Ninety minutes after the wee prick there were no nasty after-effects.

Twelve hours later, when I went to sleep, there were no ill-effects.

But I awoke around midnight with my teeth chattering like mechanical machinery and my whole body shivering. Additionally my upper-arm had become stiff. At three-thirty I woke up to all my bedclothes and nightwear thoroughly drenched in sweat. Yack! I hoped that was the end of the side-effects…

At heading towards forty-eight hours after my jab, I had slept for most of twenty-four hours. All my bones felt super-chilled. I just could not get warm, despite the sweat on my pillowcases suggesting I was burning up. 

I awoke at six-thirty in the evening for some toast and hot-milk. Basically I was off food.

At ten, with a sense of hope, I settled down for the night… Well I woke up several times. I ended up changing my PJs twice due to dampness. I had an insipient migraine which once I awoke neither developed nor faded. There was hardly any stiffness in my arm from then. So, all things considered I thought I might be on the mend. And I am sure I read that if one develops symptoms, it means one’s body is working to manufacture what is required to fight Covid-19.

So, seventy-two hours after my jab, it looks like no more chills, no more fevers and finally the return of my appetite! All that is left is soreness around the needle-point if touched and some slight swelling. Okay, I took a tad longer than the typical 24-48 hours for recovery, but I did do so finally.

My G.P. has advised me that I shall not be waiting the governmental 12-weeks between vaccination one & two, but should have the second in 6-8 weeks - so hopefully sometime in August. Then one has to wait a couple of weeks for maximum coverage.

Given how bad being infected by Covid-19 could be for people with Myalgic Encephalomyelitis (pwME), I personally have no compunction in recommending having the vaccinations. However, I am not medically trained. As ever, I strongly suggest one takes one’s own due diligence as well as consulting with one’s personal professional medics. It took my G.P. (family-doctor) six months to reach a decision on whether having the vaccination was medically appropriate and, if so, which vaccine to submit to.

[Image description: the writer’s vaccination receipt]

Below are the edited texts from my correspondence with my G.P.

December 2020

Given I have had anaphylaxis from eating garlic and that I get rashes &/or vomit if I consume other members of the onion-family, and also given the [Medicines & Healthcare Products Regulatory Agency] MHRA’s current advice, I do not consider that I should have this specific vaccination. Do you concur? If not, please provide me with reasoning and a link or two to any relevant info.

March 2021

The latest advice from the ME Association [MEA] is for pwME to have the [AstraZeneca] AZ vaccination. Their reasoning being that it was tested on Brits and therefore probably is the least risky to us.

A large survey carried out by an M.E./F.M.S. support-group out in the US, found that severe-reäctions to any of the vaccines were roughly evenly spread across the four types used there. So it seems to me, it probably would not matter which vaccine I am given - but taking account of potential anaphylaxis as above!

May 2021

As far as I can tell the MEA has not updated its advice re vaccination. At the end of April HealthRising.org, which is running a survey of M.E. & F.M.S sufferers worldwide noted that:

“People with ME/CFS/FM still appear to be having more trouble with the AstraZeneca shot. Thirty-seven percent report having a severe reaction to the first shot, and 16% reported they were still having symptoms a month later. Not enough data was available for the second shot.”

[ https://www.healthrising.org/blog/2021/04/26/fibromyalgia-chronic-fatigue-experts-coronavirus-vaccine/ ]

If you consider I ought to have the vaccine, I believe it is your clinical judgement which must decide whether or not any type is preferable or not; so I shall accept your recommendation, with the proviso that I suffer from known allergies.

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Covid-19 Vaccination at Last!

 

I wrote to my G.P. at the beginning of December 2020 to determine whether she considered that given all my health-issues Covid19 🦠 vaccination was appropriate, and, if so, which vaccine they recommended for me.

Yesterday, after several reminders, exactly six months later, they confirmed it is okay for me to have and that they considered that the AstraZeneca jab 💉 would be best. I was so relieved yesterday at this news.

This morning, a peripatetic nurse came round to give me my first shot (image of the receipt below). And I am now thrilled to bits. Ninety minutes after the wee prick there are no nasty after-effects. Keeping my fingers well and truly crossed 🤞🏻 that this situation may continue! Ha ha ha

Hallelujah! 🙌🏻

What Does Housebound Mean?

 

For several months I have been attempting to determine from my G.P. (family-doctor) whether they recommend me having the Covid19-vaccination (taking into account my various health-issues), which type to have if vaccination is clinically appropriate and also to arrange for the jab to be given at home, due to my being mostly bed-bound or bedridden as well as mostly house-bound.

I received a reply, after several reminders over these past months, last week. The practice-manager wrote:

“I have reviewed you medical record and given that you are able to travel abroad for the winter this technically does not make you housebound.” (sic)

The reader may consider that the practice-manager’s perspective is valid. However, there is no legal definition of what constitutes being house-bound (ditto in re “bedridden” or “bed-bound”). Thus, there can be no technical breach of a non-existent definition.

I have replied to the message I received and below is the pertinent section.

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Now to the the very thorny issue of what constitutes being “housebound”. As you are no doubt aware, there is no English legal definition. However, there appears to be a working NHS definition (alas I could not track down), upon which the following seem to be based:

“An individual will not be eligible for a home visit if they are able to leave their home environment on their own or with minimal assistance to visit public or social recreational public services (including shopping)” [source]

“A Housebound patient is defined as being an individual who is unable to leave their home environment due to a physical or psychological illness. An individual is not housebound if they are able to leave their home with minimal assistance to visit, for example, Neighbours, Hairdresser, Supermarket, Bingo.” [source]

“A patient is considered housebound if… The patient cannot leave home without considerable and taxing effort.” [source]

I have thus far this year only left my home on three occasions, each time with carer-support: on 12th February for a 3 minute visit a mile away (via car) to my ex-boyfriend who has cancer and who has been in a bubble of one during lock-down periods (equipment: walking-sticks & portable stool) - it took approximately two days for me to recover from the exertion; (via car) to vote in May (equipment: wheelchair) - again, it took approximately two days for me to recover from the exertion; (on foot) to visit my next-door-but-one neighbours for a socially-distanced cold meal on 22nd May (equipment: walking-sticks) - it took approximately five days for me to recover from the exertion. None of these were appointments, as I am currently unable to specify an exact time when I can do anything due to the precarious state of my health. You will note I have not left my home even once per month. In fact, I have managed to leave my bed-cell (bedroom) less than once per week this year. And that is also the same sort of statistic for last year as well.

I am NOT able to leave my home without taking into account:

* carer support - to prevent accident incl. falls (inter alia dyspraxia, BP), to support when narcoleptic ([hospital specialist/consultant]’s term) and general assistance, incl. financial know-how (inter alia dyscalculia, dyslexia);

* wheelchair or walking-sticks [US canes] (e.g. to neighbours) depending on distance;

* pain medication prior to, during and after any journey, time/distance/purpose dependent;

* incontinence-pads, depending on distance/destination/purpose - if I am likely to become anxious, then the pads are needed;

* water-bottle for car-travel as I require frequent urination when nervous, and travel generally makes me anxious;

* rest - I save up energy prior to journeys and rest afterwards to ensure I try to remain within my energy-envelope.

* sunglasses - to prevent photophobic pain.

* ear-plugs/head-phones - to prevent pain due to hyperacusis.

Under no reasonable understanding can my personal situation be deemed to be outside the remit of needing more than “minimal assistance”. When travelling abroad I take one or two carers, depending on need, as I have to be pushed in my wheelchair (partly due to the chair being unsuitable for self-propulsion) and assisted to do almost everything. Remember, here in the UK, I have carers to ensure I eat, take medications, drink and to help with personal hygiene & dressing. I am wheelchair-ed throughout the æroport. I need assistance to use the æroport toilets. I am assisted on to aircraft either manhandled or via Ambulift, depending on the æroport’s facilities. Again this is not “minimal assistance”.

Additionally for the past couple of years or so I have been bedridden [aka bed-bound] just over 95% of the time, up from my previous 85% proneness.

My en suite w.c. is 3 metres from my bed. It typically takes me upwards of 8 seconds to reach it, depending whether I walk (shuffle) or quite literally crawl. The latter I only need to do when defecation becomes necessary (IBS, diarrhœa), as I have a water-bottle for urination.

Additionally, due to my frequent falls, when out of bed and when alone in the house I wear a pendant-alarm so I can call for assistance. Frequent falling is a sign of frailty.

I also have severe difficulties in mounting or descending stairs, so generally go down on my bottom and crawl up on hands and knees. The inability to use stairs is indicative of frailty.

It is my understanding that my gait speed would also indicate frailty. Indeed, using the Edmonton Frail Scale, I come out as having mild to moderate frailty, depending on the time of year/my state of health. And bear in mind, I am not yet even considered agèd!

Furthermore, were I to be taken in an ambulance to Addenbookes or a London hospital, it would take much longer than the journey to Spain, for example. Being able to leave one’s home with assistance does not lead to the conclusion one is not house-bound, but rather the opposite, that one is house-bound without assistance.

So, to sum, I am de facto both housebound and bedridden the vast majority of the time.

Your definition and understanding appears to be lacking in understanding of my personal situation (odd given you are aware that some years I travel to Spain under the advice of both my G.P.s and hospital consultants!) and everyman’s reasonable definitions of the terms “housebound” and “bedridden”.

In the circumstances, I must insist that you develop a thoroughly thought-through policy with clear definitions of what [the medical-practice] considers “housebound” and “bedridden”. It is then imperative that [the medical-practice] goes through its patient-records and appropriately corrects them as well as taking any pro-active actions to remedy any failures to support patients.

[Image description: the writer in his bed-cell]

 

International M.E. Awareness Day 2021

Today, 12th May (US May 12th) is International M.E. Awareness Day. In some countries Myalgic Encephalomyelitis (M.E.) is misnamed Chronic Fatigue Syndrome (C.F.S.).

There are three categories of suffering per N.I.C.E.: mild - a loss of 50% of function (what other condition is described as “mild” with a loss of half one’s previous abilities!), but many can still work (G-d knows how!); moderate - mostly house-bound and unable to work; severe - mostly bed-bound. However, the M.E. community is well aware of a fourth category, “very severe”, in which sufferers are mostly blindfolded, earplugged & drip-fed, unable to do anything, not even move (often paralysed), but exist and suffer. Individuals quite literally die from M.E. [The image below is an M.E. taxonomy based on several international criteria - apologies to the sight-impaired, there is far too much text for me to type up.]

I was diagnosed with M.E in 1998. Prior to that I had been diagnosed as having Post-Viral Fatigue Syndrome. Both conditions are classified by the W.H.O. in ICD-10 at G93.3, as neurological conditions (and have been since 1969). Even so, in the U.K., Denmark & the Netherlands especially, where a psychiatric cabal control much of the medical establishment, and in the U.S. until relatively recently, the disease has been treated as a mental-health condition, in contradiction to all the scientific evidence which demonstrates inter alia differences in sufferers’ brains, spinal-columns, hearts, blood-flow, blood-work, biomes, etc.

Recently I have begun to suspect my condition probably commenced at puberty, if not beforehand. Under the current N.I.C.E. guidelines (which are about to be updated) I have been and am classified by my G.P. (family-doctor) and by my N.H.S. hospital-consultant as suffering the severe form. Mostly I am bed-bound, nigh on all the time house-bound. However, with one or two assistants, I am able to travel with lots of planning. This would put me in the moderate grouping. Similarly, there are times when I suffer temporary paralysis, which places me within the very severe grouping. M.E. Is an unpredictable disease that constantly fluctuates. Prior to Severe M.E. Day in August I hope to have conducted some research into my medical history, to attempt to determine the approximate start of my condition, assuming it is not congenital. As long as all goes well, I hope to publish a blog-post on 8th August (August 8th).

[Image Description: the writer in sunglasses and wheelchair enjoying a day out.]

However, for the purposes of my argument today, I am looking at the time-frame 1998-2021. Whilst the numbers of suffers of M.E. is in the tens of millions worldwide, and currently estimated - excluding the new-comers via Covid-19 so-called Long-Covid - to be circa 250,000 - 500,000 in the U.K. That is roughly 1:200 folk having some form of the disease. Every G.P.’s list is estimated to have around forty sufferers. And yet the vast majority of family-doctors know little or nothing about the disease apart from the myths and prejudices, which they (mostly) also perpetuate.

There is NO TREATMENT for M.E.  More than half-a-century has passed since the W.H.O. classified this disease. Until the 21st century very little medical-research was carried out. Even now, most research is funded by sufferers as governments have all but turned a blind-eye to both the disease and especially those who suffer from it. The Pharmaceutical industries have also done very little research (as far as is known), reluctant to invest monies when so little is known about the disease. However, in the past few years the Norwegian Prime Minister apologised to her citizens for their mistreatment by Norway’s health-services. Researchers, especially in the U.S., Australia, the Scandic countries and even the U.K. have been gradually uncovering the secrets of the illness and finding or developing treatments that may help sufferers. Whilst these are still the early-days for same, there is at least some hope.

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If the reader knows a person with M.E. (PwME) within their family, friend-group, or community, please do consider volunteering some of your time &/or money to an M.E. Charity.

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Apologies for the changes in text-size and alignment - this is not down to me, the writer, but due to issues with Blogger.