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.

*

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]

 

Tumblr & M.E.

At the beginning of August I wrote a blog-post entitled "Ads Are Killing Tumblr" in which I explained my reasons for departing Tumblr. However, having pondered how Tumblr currently works, I realised I could still use it and avoid the vast majority of advertisements, especially the moving, flickering ones which give me headaches due to neurological issues. I am not going to publicly detail how I get round the ads; but if one sufficiently deliberates the workings of Tumblr, I have no doubt that one will find a way.

So, one may be wondering why I have come back to Tumblr; what attracts me to the site. Well, if you read the aforementioned article, one will be aware that I have a brain issue. I suffer from Myalgic Encephalomyelitis (click on the phrase below for more articles and information), commonly abbreviated to M.E. and known as C.F.S. in the United States. I suffer from progressive aphasia (ICD-10 G31) which leads to an inability to comprehend & formulate language thus difficulties with reading, writing &/or speaking. This symptom without the speech difficulties I also endure is better known as dyslexia (ICD-10 R48), which for me is usually temporary but has lasted for periods of up to six months: sometimes as a result of exertion or post-exertion; at other times for no apparent reason.

Looking at images then means I can continue to stimulate my brain and imagination, even without the abilities to read and write. Also by sharing them, I am able to engage in some social activity (for I am mainly bed-ridden - approximately eighty percent of my time), whereby I can see others sharing the images I have posted to my own Tumblr-blog. For me that is more interaction than I would otherwise experience in my bed-cell. Additionally, this does not drain me emotionally and physically, as would real person-to-person communication and socialising.

Above are some screen-shots of crippledqueeranglo-europeanranter. By clicking on one or other of them, one can obtain a larger image. The site contains images of artworks including paintings, art photography and statuary. I should point out that my tumblr-blog is not safe for work (#nsfw) due to containing nudity and some erotica. So then, if such may shock or even offend the viewer, do not visit my site! Those of you who do take a peek, I hope you enjoy. ;)

Why I Share Personal Information Publicly

The following poster was produced by an MS group, but is equally relevant to ME, Lupus, FMS, etc.

The slogan reads:

I'M NOT ASHAMED OF MY DISEASE,

BUT I WISH I DIDN'T HAVE IT.

I HAVEN'T DONE ANYTHING TO BRING

IT UPON MYSELF, BUT I'M DOING

EVERYTHING TO FIGHT IT.

I SPEAK OPENLY ABOUT IT IN ORDER

TO RAISE AWARENESS.

 

I personally pondered a while before reaching the decision that I must publicise the effects of my ‘invisible illness’. When I am out and about, it is due to my experiencing a relatively good day. The vast majority of the time folk do not see me abed in my bed-cell swollen, in pain, suffering various neurological symptoms that militate against quotidian life let alone social contact.

Alas, in today's society where it is now acceptable to bait & hate disabled folk, it is necessary to provide personal accounts of suffering to counter the accusations of “faking it” &/or hypochondria and undermine the MSM lies & propaganda.

As I am reasonably literate and compos mentis some of the time, it is my personal moral duty to make every attempt I can to stand up for disability rights.

If my posts annoy you, feel at liberty to turn off notifications.

For those of you who tolerate my posts, thank you.

And those of you who are kind enough to share the occasional post, my deepest gratitude - and I endow you with brownie-points & fairy-dust! %D

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MS = Multiple Sclerosis

ME = Myalgic Encephalomyelitis

FMS = Fibromyalgia

MSM = main-stream media

Bored? - The best is yet to come.

 

[Image description: slogan - "THE BEST IS YET TO COME"; © n/k]

I am coming up for fifty-two and I genuinely say and believe that the present is the best part of my life. No regrets. Live each day to the fullest you are capable of. Most days I am trapped abed; but the days I am up & about are very precious. Nonetheless, even those days I am trapped in my bed-cell, through the æther I live to the fullest extent I can.

If you are bored - go for a walk (something I can no longer do);
If you are bored - read a book (something I can rarely do);
If you are bored - cook a meal for a friend (something I can do from time to time with some assistance);
If you are bored - draw, paint, create whatever (something I can no longer do);
If you are bored - go out and dance alone (something I can no longer do) and dance and dance and dance;
If you are bored - write a poem (something I can still occasionally do on those days when I have some nous);
If you are bored - well, you only have yourself to blame. As Zelda Fitzgerald said, "she refused to be bored chiefly because she wasn't boring." ;)

 

Live life whilst you can -

you never know when it will be taken from you!

[video: Pet Shop Boys - Being Boring]

 

Bedside Table

For once there will not be a photograph of my own bedside table to accompany this blog-post. I value the privacy of my bed-cell and do not like to be photographed therein. Nor do I want my personal space exposed to the world. It is my hidey-hole from the nastiness without. Goodness knows what this says about me psychologically! However, the image below is of an IKEA Dalom wooden table and represents the actual piece of furniture I own.

© IKEA

I shall nonetheless list what is to be found on my wee table.

A hands-free telephone - I do not use it to make calls, but do pick up messages when up to doing so.

A lamp to light my way when: my sleep patterns are inverted; I am kept awake with pain; or, I am just suffering an insomnient bout.

A photograph of me and my best friend from when we first met.

A rosary with cross blessed by a holy man in Brazil and gifted to me by a friend. It reminds me to count my blessings: including that I have been given the gift of friendship by not only said giver but also many other beautiful individuals.

A melamine beaker with a facsimile of an original E.H.Shepard Winnie the Pooh illustration. It's not a glass because I knock them off occasionally during fevers, glassware has a habit of breaking, and I am in no state to clear up the débris.

A memory-stick for saving (when I remember to do so!) documents I write on the laptop.

A wrist-watch so I know the day and time as my ability to internally metre their passing has long since expired.

A mobile telephone for receiving and sending text communications on the rare occasions that I cannot use social media.

A selection of pain-killers, drops, antihistamines and other medications as, for the majority of the time I'm stuck in bed, and so can self-medicate.

A selection of chill-out music for those rare occasions when I feel able to listen to a whole album or can tolerate background noise.

A pile of paperwork (notes, papers & receipts) that I keep meaning to sort through, but which I never seem to find the desire nor energy to pursue.

Additionally, under the table leans:

A bag of potential reading matter (newspapers, magazines, books, brochures, pamphlets) for those occasions when I can read and comprehend more than short bursts of text.

A box of man-size tissues for the symptoms of my constant and various allergies.

A laptop - my main means of communication and socialising; a godsend.

%)

This article is feeding into Liz Crow's artwork #beddingout which will 'occur' at the Edinburgh Fringe from today until 26th August and via Twitter using the aforesaid hashtag. For more details please go to Bedding Out in Edinburgh.

To sign the WoWpetition or just to find out more about its aims go to wowpetition.com.

all back

May is ME Awareness Month, (CFS in US) so before the month is over I thought I would share a poem I wrote at a point before I had accepted the ramifications of my condition. There is rarely full recovery from myalgic encephalomyelitis, although such is not unknown. However the longer one suffers from the ailment, the less likely recovery, let alone full recovery, becomes. That is not to say I do not occasionally wish for a miracle cure or a wonder-drug; but in the foreseeable future the latter is not probable and the former is nigh impossible.

I have the severe form as defined by National Institute for Health and Care Excellence (NICE) and confirmed by my hospital consultant (clinician). The majority of the time I am house-bound; much of the time I am bed-bound in what I ironically label my bed-cell. With the discovery of social media and the installation of wi-fi, I have carved out a role as a bedtivist, that is a - non-partisan - political activist working from bed. I feel useful again and that has done wonders for my amour-propre.

Nonetheless, I can still recall the longing for my previous existence.

all back

      and the tears well
my eyes fill
my stomach churning
constricting
pulling at me
thoughts racing
evicting them
proves hopeless
pulling at me
frustration asserts
I see a jogger
      and want to jog
I see a swimmer
      and want to swim
I see a dancer
      and want to dance
I want my freedom back
I want my body
my former physicality
back
I see a book
      and want to read it
seven days
for seven hours
an exchange
I did not solicit
I hear a debate
      and want to join in
but lose the line
what happened
to my intellect
to my memory
why is everything
about me
my being
so unreliable
give it all back
but there is no-one
listening
just my psyche
I want it back
all back
my eyes fill
finally
the tears spill

all back


My bed-cell is my own private space and I am unwilling to be photographed therein, so below is a picture of me lying propped up in the shade on my last holiday.

Battlers in the ME/CFS Wars!

I abhor conflict. I intensely dislike argument (as opposed to debate) for its own sake. I find folk who goad others objectionable. I hold intemperance, discourtesy and disrespect towards others as vices. Unreason and illogicality are symptomatic of ignorance.

Unfortunately every day I encounter these foibles in my interactions between individuals on social media, such as Twitter and Facebook, on blogs and in the comments sections under Media articles.

Their expression demonstrates a weakness of spirit by those engaged and reveals much about the writers: their bile, their hates, their bitterness, their insecurities.

Perhaps no where else do I see such negativity as amongst those on the various sides, and indeed within factions on those sides, of the ME/CFS issues. Professor attacks professor; doctor slings mud at doctor; sufferers squabble with each other. The levels of mutual suspicion and antagonism might be considered laughable if it were not for the inexorable consequences. It is pure folly!

Where in all this diatribe is the coming and working together to the benefit of patients and the advancement of medical science? Resources, time and energy are being squandered for no material gain. It has to stop and now.

I personally would try almost anything for my condition to ameliorate and have tried many things. I will give it a go whether it is an off-licence drug, a physical activity or a psychological approach to get better and I do not care one iota for all the petty - for that is what they are - opinions. I do not give a fig what the illness is labelled, just uncover what are the cause(s) and try to discover a treatment or treatments that is/are effective.

It's time to calm down, don thinking caps and try to find a route-map out of this asphyxiating infirmity. Please! I do not want to remain in my bed-cell or wheelchair for the rest of my life.

[Image description: five persons round a table smiling, two are shaking hands across the table; another stretches out a hand. © Image courtesy of Ambro / FreeDigitalPhotos.net]