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Category Archives: Life

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. 

 
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Posted by on April 27, 2019 in Life, people

 

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Knickers to it

Knickers! I dislike clothes shopping at the best of times but shopping for underoos is one of the worst.  

Once upon a few years ago I could go into several high street establishments and peruse their selection, find the multi pack high leg briefs and be spoilt for choice. Spoilt, now there’s a rarity. Nowadays sizes, materials and quality differ vastly from store to store. Steadily the selection dwindled to one high street store, and now that store has closed locally, except it’s food hall. Add the dwindling stores open along our high streets and online sites beckon.

Trouble with online is you cannot handle. My preferred store has an online shop but delivery charges and potential return costs practically matches the cost of the item. On a well known auction site a trader was selling high street store ex-stock so I plumped for a pack. They arrived but they were not my preferred store and the cotton body of the pant stretched more than the waist elastic to such a point the stretched rigid elastic dug into my flesh as I eased them up. To the bin with them! 

I am beginning to think the knicker elastic has been put in the tape measures instead of the garment.

I’ve plumped for another pack, which have the high street store logo printed on the packaging – we shall see.

 
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Posted by on April 27, 2019 in General, Grumble, Life

 

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The Ying-Yang of Reality


It’s been a twenty four hours indeed. Yesterday, dear readers I was forgotten! FORGOTTEN!! Moi, the indignity.  BFF usually calls me as she walks home from work everyday. Yesterday circumstances meant she went home at lunchtime, but come 4pm no message so I readied myself, tv muted, phone in hand, and waited.  Hmmmm, 4:15 no call, perhaps she’s chit chatting with her boss (not unusual).  Hmmm, 4:30 no call, perhaps she’s calling after getting her prescription. Hmmm, 4:40 no call, perhaps her phone died.  I sent a message, immediately my phone starts ringing “I forgot about you”. Charming! Lol.

Today my niece and great neice popped in for lunch and to help with a chore or two (at above inflation living wage pocket money rates too!) and was bestowed the honour of an original piece of artwork.  We didn’t spend long discussing the modernist take on the abstract theme of the piece, very much leaving it to the fluid thoughts of the viewer.  It could be a statement on climate change and the rising of the blue waves, or it might be Rizzie the cat lounging in the sunshine.  Either way I am rather chuffed to be considered worthy of such thought.

Life – never a smooth road, keeps one in one’s place.

 
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Posted by on February 27, 2019 in Life, people

 

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February 


It began so positively, but best laid plans and best meant intentions so often do.  After waking up I usually lazy and cogitate my plans for the day – up & dress, make coffee & lunch, plant self at desk and tick things off the various to-do lists, shuffle to sofa, fiddle & rest before going to make dinner & cook freezer foods. Simples, right?

So, initially things went as intended, got to desk with coffee and lunch, began back up procedure for computer (not on to-do list but needed), began sorting through piled detritus stuffed through the door over the past few days (not on list).

Phone rings ….. It’s on the sofa, do I wheel across and grab it or leave it, best get it … BFF needed distracting while she walked home from the City (about 1.5miles) while carrying a 4ft6 stuffed swan resplendent in gold crown and punk tutu (the swan, not BFF).  Sandwiches munched and coffee drunk while chatting.

Right, back to it. Source a few photos for new FaceBook album on group I administrate. Hmm, need to crop, tweek and © mark them, but hey it’s a job on the list 👍🏼. Then wheeling self about to get recycling into waste paper basket (not on list). Started business banking log in (ahha, that is on the list) but it’s been so long it errored out on me so had to restart all over again which means waiting for authorisation codes to come in the post (add follow up to list).  Sort through post waiting to be dealt with, add two things to to-do list.

By now I’ve been at the desk just over two hours, which means hips need resting on sofa for a while before I can confidently get up stood ….. this ends today’s productivity time. Successfully ticked off one thing, postponed one thing and added two more. 

Oh and I’ve written a blog (not on the list)

*sigh*

 
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Posted by on February 16, 2019 in General, Grumble, Life, Website

 

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January Jaggardness


I don’t like January, it is dark and grey, cold and dank. I don’t leave my dusty hovel, unless there is an absolute cannot be avoided need.  This year it feels like the morbid month began the day after boxing day and still hasn’t progressed past the first week and will drag interminably to its chilled bitter end.  Most January’s I feel like I’m waiting for the sn**, sn**, nope can’t say it, white rain, to fall, settle, freeze, melt, freeze, melt and bugger off.

Today is a typical day, I’ve not even opened the curtains.  Okay, part of that is being lazy, part is because it’s a Sunday and I didn’t begin my attempt at rising until after 12.30 (I was listening to the radio, mostly, but did doze through desert island discs).  By the time I got up-stood, been to the bathroom, then the kitchen to make lunch etc it was gone 1.30 and it would be dark by 3.30/4, hardly worth the muscle strain and ache.

That’s not to say stuff has not gotten done.  I’ve been working on my crochet, occasionally, I’ve grappled with the GDPR requirements on websites (thank you, piggin interfering EU), I’ve reconciled my finances and even remembered to pay the credit card bill.  I’ve got rather successful at playing cards and solved a few puzzles. 

There has been momentary respite, courtesy of my Great Niece and her rendition of ShotGun, Baby Shark, Twinkle Twinkle, Stick, and other pearls of wisdom.  She’s tall for her age and when she trots in wearing her nursery uniform she looks more like five than 3 years 5 months.

My erratic sleep pattern suffers too. I wake feeling more sleepy and weary than when I went to bed. I sit on the sofa feeling too alert to go to bed. If I manage a complete couple of hours unbroken sleep then it’s a rarity. 

Not sure what my next battle plan will be, it’s rather dependant on others and their availability.  Who knows I might even manage to conjure up a white blog or two (steady on).

Tis but the season, and shall pass…..

 
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Posted by on January 13, 2019 in Grumble, Life, Website

 

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It’s just a Tuesday


I’m not someone who sees the New Year as a fresh beginning, there are those that do and are successful and enthused about the future, their refreshed goals and positive intentions, I wish them well.  New Year traditionally felt like waiting for the clock to strike midnight so I could go to bed.  When I moved out of home it was often the night I was early to bed, sometimes reading a Christmas gift book, or just trying my best to sleep.  Now with portable technology I’m watching something on an app and only the crescendo of fireworks and cacophony of ships horns beyond my window signals the midnight chime, followed later with numerous sirens as the over indulged injure themselves or cause trouble.

This festive season has been intentionally scaled back and quiet because of an off-line family situation that has cast quite the shadow, preoccupying our minds with uncertainty and a side of unknown fear.  Yet it has been pleasant to not be swamped by the stresses of Christmas cheer and so forth.  

While I was googling for an heading image, I was undecided between two, so here’s the other one.

 

Right, let’s shock the fingers and crochet a line or four, maybe conjure up a to-do list of projects for the next month, grapple with organising my usual (not using the word normal, don’t think anything about my world can be described as that).  Happy Tuesday, yes it is only Tuesday.

 
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Posted by on January 1, 2019 in General, Life

 

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