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Tag Archives: BFF

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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The Best Of Fun


Recently my BFF came to play stay for a couple of weeks. Our twice annual pyjama party complete with fabulous food, furry entertainment from #NotMyCat Mickey (aka Mickster, mooch, buggerboo, etc), lots of conversations and reminiscences, music, stitching and of course movies.

  • Barefoot in the Park
  • Kind Hearts and Coronets
  • Cromwell
  • Goodbye Christopher Robin
  • The Way
  • Walk In The Woods
  • The Road
  • The Battle of the Sexes
  • Close Encounters of the Third Kind
  • Darkest Hour
  • Stonehearst Asylum 
  • In The Shadow of the Moon
  • Bohemian Rhapsody
  • To Catch a Thief
  • Summertime
  • The Fastest Indian in the World
  • Gravity
  • The Zookeepers Wife
  • Sybil
  • Blackboard Jungle
  • Mad Men season one, two, three, four and five

BFF had had a vertigo episode before she came to stay, and while resting in her bed she was able to focus on crocheting some cat blankets and brought 10 finished ones with her, along with a stash of double knitting yarn. She is such a quick stitcher that she could stitch a complete blanket every day. We paid a visit to the local wool shop to source a cotton blend to complete one of my blankets. Before long we had 23 blankets ready, and contacted the local cat protection branch for somebody to come and collect them. They posted a very nice thank you message on their Facebook page.

We ventured in to town to take care of a few errands, and often trotted to the local supermarket for nibbles and treats. On Easter Saturday we even went to the local beach and wondered the Esplanade before sitting on a bench and enjoying the sunshine. It was quite unexpected as often there is a cooling sea breeze but there was hardly any movement.

All too soon our fun has to come to an end, the suitcase is packed, and she is returning home. We re-set the counter for her return sometime in September. 

 
9 Comments

Posted by on April 27, 2019 in Life, people

 

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The Holibobs Blues


Like the weather, my mood has dipped to decidedly chilly since my BFF fly off back home just over a week ago.  I’m sure the seventeen days she was here are the absolutely fastest of the year.  It’s amazing how a few days of simple changes can make such a difference.  Okay, so we are not the most adventurous vacationers, infact our greatest outing was to the cinema.  Spending our days chatting, reminiscing, stitching, playing with ‘Not My Cat’ (didn’t take him long to catch on treat giver was back, lol).  

So viewing pleasures ….. I’ve forgotten a few.

  • Funny Girl
  • Funny Lady
  • Churchill
  • Another Mother’s Son
  • Christine
  • Hitchcocks Lifeboat
  • The Girl
  • Breath
  • Shepherd & Butchers
  • Eight Days A Week
  • Love & Mercy
  • Eat Pray Love
  • Before You Go To Sleep
  • Deniel
  • Sully
  • Doc Martin
  • The Marvellous Mrs Maisel

Good food, treat food, tasty food, thoroughly enjoyed and relished.

It’s horrid to say good bye when we know it will be a few months before we are together again. 

To add salt to my blue mood, you remember that list, just a few things, that I set to do before BFF arrive Do? Yeah, well, erm, that didn’t go so good either, but that’s for another post.

 
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Posted by on October 23, 2018 in Films, General, Life, people

 

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Holibobs & Burpdays


Like all things, it came to an end all too quickly. My bestest best friend in the whole wide world came up for a two week stay that coincided with my 50th birthday. Two whole weeks of glorious food, entertaining conversations, laziness and laughter, being spoilt and pampered, as well as my birthday celebrations.  We watched a number of interesting films such as To Kill A Mockingbird, Suffragette, Hitch, Chitty Chitty Bang Bang, and Charlie and the Chocolate Factory to name a few, we binge watched Blue Planet as well as a lot of Bargain Hunt.

Annoyingly the weather was not bright enough to venture out, but we did take a walk to The Esplanade despite the chill wind for a fish and chip lunch, also a mooch along the High Street – The local yarn shop was successfully avoided, only because we both had crochet projects that needed to be worked on and have enough to keep us going for ever.

I had a wonderful birthday, with cards, flowers and gifts. I had asked for cash to buy a special piece of jewellery and my budget was exceeded. The gold and black pendant watch far exceeded my expectations and arrived on my birthday even though it was not due for another week. When I went out for a meal with the family and friends, my wheelchair was festooned with balloons, and I had a large badge pinned to my dress (yes folks, I was in a dress) so there was no hiding that I had reached my half century birthday. That’s it now, I have decided I am having no more birthdays!!

The #NotMyCat affectionately known as Mickey, he also enjoyed my BFF’s visit as he gets super spoiled with treats and food and cuddles each and every day. The introduction of cat nip was definitely entertaining verging sometimes on hysterical!

They say a change is as good as a rest, I do feel rested, and I am trying to rejuvenate my get-up-and-get-on-with-it attitude that had slipped somewhat. Mind you, I’m not keen on this having to make my own coffee lark!!

 
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Posted by on April 5, 2018 in General, Life, people, Pets, Projects

 

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Battle Plan Bidness


There are only eleven days until my BFF comes to play I mean stay, yes stay.  Always much look forwardededed to with electric anticipation. We plan tasty foods and we plan loads of films and things, we plan plans to stitch n bitch and sometimes actually manage to stitch too!  But I have a rival, someone with whom I absolutely cannot compete with, he is such a courteous gentleman, he can melt you with just a blink of his mesmerising eyes, of course I am referring to ‘Mikey’ the not-my-cat who sits on my recycling bin ‘supervising’ kitchen activities and persuading to be let in.

Her imminent arrival also gives me the impetus to get on with the to-do list.  So here we go, my list

  • Tidy/sort/chuck bathroom junk
  • Today/sort/chuck bedroom junk
  • Wash towels
  • Start big shop list of don’t forgets
  • Shift/bag loose balls of yarn
  • Tidy away untidied bedroom bits
  • Finish web album work
  • Type up pod cast article
  • Create contact page

I’ve slowly been catching up with the web work at my desk, I’m still trying to master getting up from my desk but I am no nearer success.  There’s a lazy aspect in my brain, I psych myself up, get hands and chair in place, sit ready, take a deep breath and flop as the impetus flood away and despondency makes me change my mind and I end up doing the hip aching chair shuffle to the sofa.

When BFF is here I plan to ftp the album files to the server, a task that takes numerous hours and double checking of files to make sure it’s done it all proper like. So hence the deadline to get all the updates and info ready to be published.

Really looking forward to our two weeks PJ party, even if it does include my 0-heck golden gauged half century type birthday.

 
4 Comments

Posted by on March 8, 2018 in General, Projects, Tech, Website

 

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I Got Da Bluuuuues


When ever my BFF and I have to say bye-bye there is always a lump in my throat, but this time there was significant eye leakage, several sobs and yes a couple of stomach gripping knots as the taxi turned right out of my street taking her to the airport and home to hubby, daughter and two ginger cats.

It’s impossible to put my finger exactly on why, it’s part history, part friendship, part closeness, part loss, part safety, part encouragement, part silliness, and a whole heap of, it’s just fun to be together.

So what wild shenanigans did we get up to…….. well, you might not believe it, it could possibly shock some, but, well, none.  Just chatting, watching films, finding all kinds of things on the Internet,  eating good treat food, doing some stitching, relaxing, taking a walk to the beach, shopping for treats; just being removed from our expected usual everyday.

Highlight – Lazing in bed, not quite asleep when BFF remarked “What the…..oh it’s you!”  You need a little backstory here.

A neighbourhood cat has taken to sitting on my recycling bin which is just outside my back door. He peers in, looking curious, has wandered into the kitchen when the door was open. BFF opened the kitchen window and he strolled in and discovered two suckers for head rubs, chin scratches and ham, chicken and dreamies.  If the window was left open he’d just stroll in and say hello, not in a hurry to leave.  Over a day or two of repeated visits (BFF is such a softie) little encouragement was needed. He’s been nicknamed Mickey because he’s white with a black tail and black ears.  One night it was rather warm so BFF opened my bedroom window slightly, maybe four or so inches, the curtains were slightly gaped, we comfortably resettled to sleep.  Cheeky Mickey got brave from the bin top and mastered the narrow, tilted, slippery windowsill, squeezed through the gap, avoided the bits and bobs on the windowsill as well as the bookcase, jumped to the floor and neither of us heard anything until he jumped on the bed and walked up BFF!  Lol, cheeky, little devil.


We were productive, I’ve ‘almost’ finished the cot blanket, and already started a second (naughty me, should finish one before starting another), BFF knitted a couple of hats and booties for the doll. Yes, Mickey helped with the wool tension on the big ripple afghan.

Now it’s time to get back to the normal everyday, not as much fun, not as much company and not such enticing food. Familiar aches are returning. Time to reset the countdown app for her return in March. 

 
8 Comments

Posted by on October 10, 2017 in General, Life, people, Pets, Projects

 

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