And She Shall Rise …. (Hopefully)

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Well that is the plan …. maybe.  As many regular readers may remember I have a muscle wasting disease called fascia-humeral-humeral Muscular Dystrophy, it’s slowly getting worse rendering me weaker so simple tasks become a complete nightmare, some impossible. Skills and abilities, hopes and dreams have been taken away bit by bit.

Last year I began experiencing serious issues getting stood up from my desk. Now my desk is important to me. It is my link to outside life, other than the practical chores like paying bills or shopping for groceries or gifts or writing letters and emails, it is also my coffee shop where I interact with the world through social media, forums and such. It is where I create, code, make web updates, edit photos, write book reviews and blog posts and where I listen to music as I work.  My mornings are usually spent at the desk dealing with business after that first cup of coffee.  That was the issue that made the problem, a problem, because I’d need a wee.  My ‘alternate’ route was to shuffle onto the dining chair, then scooch (technical term) across to the sofa, shift to the sofa, get up stood and trot off to the bathroom, sounds a palavar, it is when you are bursting!  So I stopped being at my desk as much or for as long, which stopped me listening to music, which stopped me spending as much time creating, which stopped me writing letters and emails to family and friends, which had me putting off jobs! projects! research etc.  I have my iPad but it’s not the same, there are things I need to do on my Mac at my desk.

It took a while to admit defeat, it took longer to try and seek an answer. I’m tired of investing hope to be disappointed, or struggling constantly for no reward.  Anyway, I sourced a company who sent their physiotherapist to come visit me and evaluate my situation.  Several hours later, after numerous getting ups to show my technique and what I hoped to achieve, he left and the next day sent me details and costs of a wizzy chair and desk.  I was hopefully, but also realistic that even when it all arrived it would take several attempts, many many failed attempts, to get stood up from my desk in a reasonably straightforward consistent manner, like I do from the bed, the loo and the sofa (the only other spots I can get up from). 

On Wednesday last week the desk, which can rise from knee height to standing working height and has preset buttons to automatically adjust to a height set to a particular millimetre, was built and installed with the new three draw unit beside it, the wizzy chair which rises up and down via a button touch, has wheelers that can be breaked, with arms that drop to be level with the seat, has a lockable swivel, as well as adjustable tilt, back rest, head rest, was wheeled in. I took a seat proudly……got comfy…..and then couldn’t get up. Okay, no prob, just need to get the feel, learn where the chair needs to be, learn and set the desk at just the right height and if not on the first go by the third it will be set. Erm, no. It ain’t happening, I ain’t progressing ….. it is annoying because I cannot sense what is going wrong, what needs to change to achieve the goal. Is it mental me expecting too much giving in too soon, menopause me with all sorts out of sorts, or MD me weakening have I left it too late.

*sigh*

Today I had my lunch at my desk, a list of got to get done jobs, played some favoured tunes to motivate and after a couple of hours tried getting up, couldn’t, so carried on getting more done, enjoying the fun of being at my desk. Then shuffled across to the sofa.

Maybe another day will work, who knows *shrug*

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The Clutter Monkey

I’m sure there is a monkey in my hovel cluttering the place, I’m chasing him from room to room. 

Before Christmas certain ornaments are put away to make room for the festive adornment, after Chtistmas the decorations are repacked and the ornaments put back (not necessarily in the same place, it’s a Big Sis thing), and there are the Christmas gifts to be homed and nibbles to be nibbled.  This year I have new furniture coming, a desk and chair, so the old one had to be emptied, items sorted and graded as kept, to charity or ditched. Chaos ensued as the area was kept free to allow installation room, then things needed putting away.  Not straightforward as the draws are of a different dimensions.  

Finally the work station area is just about sorted, but now the ‘items’ in the bathroom seem to be growing, it’s another area that needs de-cluttering…… It should only take half an hour to resort and tidy the items (she says hopefully).

My bedside draws seem to have accumulated various items of clothing, books, bits and care (slight boo boo sustained across Christmas) on top of them, one of my wool bags got utilised and the wool needs putting in another bag. Things like that.  But I feel hemmed in by the items awaiting attention.

As soon as I get one area straight, the clutter monkey seems to have found new stuff to leave else where. He’s a little devil!

 

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.

 

OpenReach? More like ClosedFist!

I am stuck in the middle of a futile tug of war.  I am a Sky customer, OpenReach say I have an ‘unstable’ phone line which means from time to time it will exhibit a confusing range of symptoms.  The internet will drop off and takes ages to reconnect, it may remain connected for micro seconds or day long hours.  The phone might crackle, it might not, it might at the beginning of a call or during the call, it might kick the internet off. There is no consistency.

Reporting it to Sky is a tedious faff, because you cannot report it online, you have to telephone them [on the dodgy phone line], then you go through a series of unplug this plug it back, unplug this plug it back scenario – each one meaning terminating the call and waiting for them to call back. This results in a report Sky send to OpenReach, which they take their sweet sweet time doing anything about and never ever call me back to say its been done [probably because I might blast them a new one!].  Seemingly my system behaves and a month later we start the merry-go-round again.

*sigh*

All I can do is keep reporting the fault to Sky, all they can do is report it to OpenReach and all OpenReach do is change the bit of sticky tape and not truly ‘fix’ the issue.  No point switching providers as whomever I am with still relies on the same infrastructure, which results in reporting things for OpenReach to botch.

In the grand scheme of things it is trivial, but like a hangnail or a lash in you eye, it irritates, it rankles, it is unnecessary if only it was fixed right the first time.

Off to call them yet again …….

 

Hot Water Follies

Let me set the environment – living in a terrace there are only windows at the front [my lounge] and at the back [kitchen and bedroom], sandwiched between those rooms are my bathroom, the inner hall and the cupboard with the water tanks in, this area has no natural light coming from anywhere unless the other rooms doors are open.  As it is just me here, I often do not bother with putting lights on, or it will just be the hall light, I rarely close my bathroom door.

The other day I was shuffling through my hallway and felt warmth under my foot – not unusual, it is where the hot water pipe is heading towards the kitchen/bathroom, after washing my hair/bod, or the dishes I regularly feel the warmth there..  I felt it again the next morning and it struck me, hang on self, you’ve just got up, no tap has been turned on, there should be no hot water flowing through the pipe to warm the carpet …. oh bugger ….. does this mean I have a leak?

Thoughts were overtaken by my tooth disaster [more in next blog], but every time I travelled through the hallway my toes felt the warmth from the pipe.  I lay in bed thinking, right need to phone a plumber, but where is it leaking, nothing in the kitchen is damp, the bathroom is a wetroom and everything is sealed.  I have visions of the nightmare as my hovel was ripped apart, flooring, tiling, walls exposed and broken through to find where the offending drip was dripping.  I could not hear any dripping or gushing in the tanks so it was a slow continual silent trickle.

A sighed, preparing myself for a serious financial hit, well another financial hit [just heard about the dentist bill].

Turning the light on in the bathroom, had a wee, tidied up, got my chair positioned to get up with I had shuffled on the bathroom stool.  Sat on the stool facing the sink, put the plug in the hole, turned and grabbed my hairbrush in preparation for washing my hair and noticed that there was water accumulating in the basin but no tap has been touched.

Then I saw it, the silent drip drip drip drip drip drip from the hot water tap.  I placed my extended digit at the swing arm and pushed it all of 2 millimetres and the drip drip drip drip stopped.  This was the leak.  Why had I not noticed it at any other time!  Well you see I cannot stand at the sink and wash my hands, and reaching from the loo is not good either because well wet hands, damp hands do not aid the getting stood up. I use hand gels and wet wipes. The semi darkness had not caught my peripheral vision and because it was silent it did not alert my ears.

  What a plonker!

 

Hurry up and panic

Things are starting to gear up a notch and the calendar turned into its final home stretch.  The cards are done, some with short letters and photos.  I have not started the wrapping yet, mainly because I do not now where to start! I need to crack at it tomorrow because on Monday it is final city shop, so those last needs have to be gotten.  

We try and get done early because getting around with the wheelchair when the world is out makes life hard.  As a joke a friend persuaded me to buy a dogs squeaks cracker toy, as a sort of “mind me, shift your butt, thats me you’re about to fall over” alarm thang.  If you hear of riots and swat teams closing a city centre, it is likely me and my squeak causing civil disturbance.

Sad news, a family friend died last Sunday, I had known him all my life.  Bob had a calm patient aura, he was so amusing with his anecdotes and could have you in fits.  When it came to describing all things engineering his vocal sound effect were mastery itself.  I remember a story of when he and my father were off in France on a Veteran Car Club jolly, they were staying at a rather posh hotel and as the dessert plates were removed the waiter placed a thimble sized coffee cup before each person.  Bob lifted and looked at the cup, and then called the waiter over, he asked to see a breakfast cup, the waiter duly went of, slightly perplexed, and returned with something akin to a cup more like a small bowl.  Bob turned the thimble cup upside down on its saucer and placed that in the centre of the table, taking the bowl cup he placed that in front of him and said “You can serve the coffee now” with such a gentlemanly smile that the waiter did indeed fill the breakfast cup up with strong espresso coffee.  I wish I had had more opportunities and ability to visit more often.  He taught me fractions and I remember the sensation of the penny dropping as it all made sense.

I got side tracked last weekend by a new crochet project, those of you on facebook will have seen the evidence.  I am now on the round rows, 180 stitches around, does fair strain my elbow and shoulder, so I must be strict with myself and just do one row otherwise the arm is not so effective with the important stuff like, getting stood up.

To my pals and cohorts in Our-Place, I am working on a poem and I have some amusing carols for you.  I’ll likely post the poem sometime next week, BCUK permitting [keep getting ‘post does not exist’ thing every time I post anywhere – tedious].

Books – I have kind of gotten bored with writing reviews, you can only say “enjoyable, well placed, sensible plot, well written, good read’ so many ways before you feel you are repeating yourself.  Anyway, I have read Diary of a Nobody [very amusing], Hedda Gabler [mildly disappointing], Death By Deceit [interesting twist and herrings], The One You Really Want [fun, light, situation comedy style], Skeleton’s In The Closet [a bit slow, a tad silly, but well paced plot].  Still averaging about one a week, although I will soon be starting a book book, one of them eco-friendly, hard copy,non-electronic things [lol].  It takes me longer to read a paperback book as I cannot hold it as comfortably nor for as long as I can with the Kindle.

Right then, off to do my row and watch a spot of Harry Potter.

 

57 Packets of Crisps!!!

I must admit I am having something of a productive week, which will fall into disaster having declared it so as Lord Sod, Major Murphy and Flt Sgt Fate are just waiting to dig in.

I have been taking care of those small jobs, the ones where you need to empty the draw and put away the paperwork, where you get round to uploading the 500 photos that you intend to get printed off as a christmas gift to someone [don’t worry they’re not one of my readers], the writing to the Blue Badge people because they forgot to send back of evidence of entitlement, the emailing the new Managing Agents because they are now 10 months late in doing something statutory,  email new bio blurb to MD boss, my Yuletide list [which my Sis forbade me to include books, dvds, cd’s, downloads, vouchers or gift tokens, my first list showed photos of £5, £10 & £20 notes she rejected it], the gifts ideas of what to get, emailing family members of what they might get “Granddad” or “Nana”, ordering those little oddities from eBay – all those types of to-do’s.

At the moment a pot of goulash and bolognese are cooling in the kitchen ready to be dished up and popped in the freezer. I initially thought of titling this blog as “Washing Up Again” as I need to wash the saucepans [again] before doing tonights dinner.  Tomorrow I am cooking the chicken curry if I have enough freezer containers left.  Oh yes, I also defrosted the fridge Tuesday.

Yesterday after Tesco had delivered my shopping we jaunted out to the new store “Home Bargains”, it is not exactly a supermarket but it has a range of gifts, home items, household goods, toiletries, stationery … kind of like a Wilkinsons with more food and bargains.  They had crisps on offer – we do not eat many packets but do begrudge paying the main stores prices [6 pkt multi pack £1.69 or 3 for £4] – they have 12 pkt with 2 extra free for £1.49, ahh I hear you wonder, some generic unknown brand but no these were Walkers, nor were they near their nuclear explosion date, also to tempt were french fries and quavers for even less.  We stocked the cupboards, getting home I had to do the math, 57 individual packets that worked out to 13 pence each – that has to be the bargain of the year!!

With so many little jobs cleared out the way, I can tackle some bigger ones tomorrow, like contacting Sky about their telephone/broadband package and telling Vodafone I intend to change things.

Must message niece before I forget, I need a hair harvest.

3pm soon, I have earned some time off, 15-1 with my feet up I think …. do I want a packet of crisps with my coffee???