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This Change Is No Rest

It is mumbled in intelligent circles that change is as good as a rest, and usually when my BFF comes to stay or I am at my sisters for Christmas this can ring true. My muscles and logistical brain cells can take a break from having to struggle with movement.

However when my BFF came to stay for a couple of weeks at the beginning of April my brain and muscles decided they had had enough of the continual physical and mental struggle with just getting stood up. Usually I am lifted to my feet, with my dead body weight supported by BFF until I am balanced, then I can totter off to where I need to go. Being lifted takes all the physical strain and stresses off my joints, it only takes seconds to do, requires minimal concentration, which all equates to a rest.

Instead of it being restful, it highlighted in fluorescent neon with flashing lights and klaxons just how utterly exhausted I am when doing it by myself alone. Whether it was the eight, nine, ten attempts it takes every morning just to get up from sitting on the bed to standing, whether it was the physical exertion of standing from the toilet and the number of times it just doesn’t happen, whether it was constantly wondering and planning when I would next get up in order to get to the bathroom and/or then get to the kitchen to prepare food et cetera – it was all too much, I broke.

But I am completely out of my depth, I did not know who to contact, I did not know what the answer would be, I did not know how long it would take to be rectified, or even if my situation was rectifiable. Everything was completely overwhelming.

Muscular Dystrophy have regional care advisors however contacting one was not that straightforward as HQ did not have the details of the new incumbent who covers my area, fortunately friends in the right places knew the right person to ask and the RCA visited the next day. After a great deal of discussion, and tears on my part, she left intending to initiate an armful of referrals. That meant that I had to confess to family the severity of my struggles.

Professional peeps have been responding to these “urgent” referrals, but as is often the case they’re asking what help I want when I don’t know what I want, what is available or what will work. Social Services sent their directory, a glorified phone book, which isn’t offering straightforward answers, Wheelchair Services have lost me (I’ve had a manual chair for 18 years, but I only deal with their contracted maintenance people and never the office). Physio cannot offer any practical help because the nature of MD is debilitating rather than rehabilitation. Occupational Health was more positive but nothing can be set in place yet as it depends on actions by others.

So, a month later the result is ……. carry on struggling, failing, waiting.

What I need (am hoping for) is a small compact electric wheelchair that can rise to enable me to cook or simply reach the light switch, and can manage the tight turns and dimensions of my little hovel. If there isn’t one, then I will have to move, but to where I know not, nor how long it will take. I fear I am hanging too much hope on one thing.

I am grieving, grieving for the life I had, the struggle to keep the life I have, the hopes for a future life. All my hopes, skills, dreams have been quashed. The talking, admitting, confessing to the numerous professionals has not been a positive experience, trying to imagine working solutions and all these imposed changes will bring, it has rendered me deflated, defeated, despondent, ashamed and humiliated.

The NHS Wheelchair Services chap has visited with mixed results. The NHS is charged with providing a mobility solution, an indoor powered chair that might be used outdoors too. Many people need chairs with other actions, say to rise up to enable someone to reach a work surface to make a drink or meal, or to rise up to turn on/off a light switch, but these are not classed as ‘mobile’ but ‘social’ actions so they cannot provide any chair to me. But they still need me to take an indoor and an outdoor driving test (stop laughing). I can apply for a ‘personal wheelchair budget’ known as a voucher, where the NHS pay for part of a private purchase chair up to what they would have been charged (aka what a suit has decided is a reasonable minimal contribution). So I’ve to find my own solution, if it exists, if anything can be sourced closer than a county away.

The second problem is my small hovel. No one can tell me whether a chair can manage the tight turn into my bathroom through its narrow door, and no one can tell me what happens, how I am supposed to live, if I cannot get into the bathroom at all. No one can tell me a housing solution.

Now six weeks on, I just have to struggle on taking upwards of 45-minutes to have a wee. Speaking of which…..

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Posted by on May 31, 2019 in Life

 

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I Hate Halloween (still)

 

Time for a repost…

It all stems back to a incident in 1973/1974 and some decades later the fear within still resides and affects my behaviour.

Way back then I was a small child, only child of the house. We lived in a new house in the village, there were no street lights and few neighbours. The room beside the main lounge/dinner, always named the little lounge, was where I would play most evenings, not disturbing my parents. The window, at right angles from the main lounge windows, looked out across the lawn and across the neighbours drive. It was a very quiet village and as my street was a cul de sac of only a dozen properties not much traffic either. It was never unusual for the curtains to be left open after all there was no one to look-in.

One of the main streets [the village centered around a t-junction beside an ancient Priory and river crossing] had the affluent estates, mansions of six or seven bedrooms in acres of land, some only years old some dating pre-victorian, and as the oil industry was beginning to boom on the coast these executive dwellings were rented to upper managements families, thus why we had American families in the village.

The ‘festival’ of trick or treating was unknown to my neck of the woods, yes we were aware of All Hallow’s Eve, the night of witches and gouls, stories of fright but other than that is was a non-event.

I vividly recall that night without much prompting, I was playing gymnastics in the little lounge. forward rolls, backward rolls and so forth, balancing, pretending to tight-rope walk when there was a knock at the window. I looked up expecting to see a familiar face who had tried to gain our attention by knocking at the front door but had not been heard, but I was much mistaken. I saw a light shining upon a glowing disfigured face with a blood curdling moan eminating and nothing but pure blackness around. I was petrified, scared witless at this utter terror before me. I know I screamed with all the effort I could muster. I ran into the main lounge and leapt to my Mother startled by my activity, the leap was close to record breaking for a 5/6year old. I was shaking, howling, in such utter distress and hysteria.

My Father hurried from the house. It was not until many years later that someone else told me he caught one of the teens who had taken part in this deed, had grabbed him by the scruff of his jacket, pulling him to within an inch of his face and shouted most violently at him.

The next day as I boarded the bus for school, I knew instantly who had been involved, the two american teenage boys from the large house and one local boy, they were a gang of three, their snickers and glares displayed their guilt. I was so angry, yet utterly intimidated.

It is now approaching dusk and my nerves are already twitching to close the curtains and lock the door. When I first moved into my home the first couple of All Hallow’s Eve’s I could not bring myself to be in my kitchen and cook because there was nothing to cover the window and door, eventhough there was no way for anyone to get to them, the fear was there. When I worked flexi-time at the Agency I always left the moment core time was over and drove home to get hidden in my home.

I don’t for a moment imagine those three fellows even remember frightening me that night, but I do. I hate halloween.

EDIT :: I still close the curtains early, I am still on edge should there be a knock at my door (which would be ignored), but I know I’ll be fine.

 
5 Comments

Posted by on October 31, 2017 in General, Life, people

 

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Frustrated Technically

 

The question seemed simple “Can I send a PDF file to my Kindle?” Of course my first course of action was to ask the great oracle that is Google. The first page of potential answers contained those comforting words “easy” and “simple”, that should have sent the klaxons of doom going off at ear splitting decibels.

Apparently it’s just three manageable steps. 1 make sure your email is added to the accepted list  in ‘manage devices & settings’ [done]   2 find your kindle’s email [done].  3 send email with attachment from your accepted email to your kindle email [done] …… Aaaaand ta-da, all done.

But it didn’t.

Of course, it didn’t, any “easy and simple” instructions aren’t.

Back to Google, read through another dozen articles all giving the same three instructions. Try them again, still no document appearing on kindle screen.  Scroll through the archive list on Amazon (all two hundred and twenty titles) incase it gets put there [nope].  Read through another few articles, consider an online chat to find out the all important vital fourth step that’s missing.  Turn over and sleep on it.

Next day, look for answers on Google again, find a little added extra some add to step 3 put ‘convert’ into email subject line.  Step 4 Check ‘Doc’s’ on archive lists on Amazon ‘Manage devices & settings”. Step 5 send from archive to required device.

Guess what………………………..It worked!!!

It’s not just me, Is its? Not because I’m getting older and technology is getting younger? 

 
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Posted by on October 12, 2017 in General, Grumble, Tech

 

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Number me blind

too-many-numbers

HHHHEEEEEELLLLLLLLPPPPPPPPPP

I know, not a word often heard from my lips, but you see Google has confused me and Bing has let me down .. so I turn to you wise worldly fellows for some intelligent assistance [is that enough sugar soaping grovelling coz my knees are hurting and this sweetness is making me nauseaous].

Trawling through a mountain of World War 2 papers and so forth trying to find what might be deemed as a ‘personnel number’ or ‘Civilian Contractor Number’ or a “US Army Number’ ….. numbers everywhere.  Why this fixation with numbers there are 26 letters and only 10 numbers, you’re gonna run out quickly!!  I digress, I am wondering whether you know, or you know a group or organisation who might know, what a particular numerical format might relate to.

I have things like CWS-[a number to do with grade] and I have an enticing #NNNNN [symbol and five digits, sometimes prefixed with AGO], and also a AG-NNN[again N being a number].  All very mind boggling, I am almost sure the first set it to do with rank and grade or a work acronym but the other two are more intriguing.

Any thoughts be much appreciated.

 
6 Comments

Posted by on February 16, 2014 in Uncategorized

 

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