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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How Much Do You Forward Think?

Are you enjoying your lazy Sunday evening?  Are you comfy, feet up, maybe watching the GP, or reading a book, not really thinking of anything.  I’m sure there are a few readers out there chasing those last chores to be ready for the ‘paid job’ that calls on a Monday morning.  Me? I’m just strategising my logistics.

Before getting up to start dinner I had to plan, and plan in detail.  First put used dish, coffee mug and trash on the chair. Get up, off for a wee we go, whilst seated remember to roll up your sleeves (can’t do it standing up). Once in kitchen turn on grill as you pass taking dirties to the sink. Fill washing up bowl.  Move dry pots from draining board to oven top and put pork steak under the grill and set time for 5 minutes. Put pots away in the cupboard, get dinner plate out and rice packet.  Return to sink, start washing up (technical glitch, I forgot the sleeve rolling, sigh, options don’t do dishes or try and squish up sleeves keeping elbows at my side to hold them out the water). Beep beep beep, okay turn over steak, get rice pack ready to zap in microwave.  Stuff trash into bag ready to deal with tomorrow. Turn everything off, dish up, return to lounge.

Essentially, no journey is a single task, and you cannot back track or forget something, and you cannot drop anything. Get it right first time, every time.

Now I’m planning bedtime. Put cardigan on chair, get up and off for a wee, off to bed. Put cardy in laundry basket, get clean clothes out onto chair, put dirty wearings in the basket.  Hold that thought ……… I need to take the phone with me to put on the bedroom charger ……. put phone under cardigan otherwise it will slide off.  Contingency plan, if I cannot get up off the loo, leave phone in the bathroom, put cardy on back of chair (I sit on the chair and shuffle through to the bed).  Okay that should work.

In bed I’ll strategise tomorrow. Up, off to the bathroom, dressed and etc, return to the bedroom. Fold laundry put on chair (unfolded tends to slide off and I cannot pick anything up off the floor) make way to kitchen and load the washing machine and start, put dry bath towel on chair, put away last nights washing up and return to bedroom.  Fold towel and leave on chest of draws to take to bathroom next morning (haven’t the strength/balance to do it as its own job).  I have to sit and rest because I’ve not got the energy for the next bit as well. 

Right then, up, to the kitchen, make coffee and brunch/lunch sandwich, take out dinner from the freezer.  Waddle through to the desk, get seated.  Wheel to sofa and grab purse and note pad, check work list …… Hold on, hold on, I forgot something, I’m taking the phone through tonight, so must remember to put phone on chair before getting up and making lunch.

This is nothing special, this is everyday.  I’m constantly going over the next set of logistics, adding and amending, adjusting and revising.

And some people have problems solving the old fox-chicken-corn across the river riddle.

 

30 Seconds or 30 Minutes, it’s timeless

Could you, dear reader, try and do something for me.  You see no matter how strong the desire, how consuming the craving, I am physically, totally, completely unable to do it, and that denial of free choice chips and nibbles at the strongest resolve and will to ‘make the best of it’.

So, on this glorious June afternoon, take a step outside, sit on your patio chair or door step, or stand barefoot in the grass; take a deep breath, observe what’s around you (don’t just see it), feel the sun, the breeze, the air on your face, listen to the natural sounds about you (don’t just hear them), and take another breath, slowly in and slowly out.  Don’t think, don’t fret, don’t stress, just be present in yourself, in that moment.

It doesn’t take much time, it can be the time it takes a kettle to boil or the microwave to ping, or child one to clump child two and start screaming, lol. But man oh man, that briefest moment of calm can do so much good to the mental health if, as busy humans, we do this regularly.

It’s truly a gorgeous day today, one I’d love to sit outside and read my book, have a (albeit one sided) conversation with a passing cat or chirping black bird, cogitate my thoughts or feel the day fresh against my exposed skin, even just to put my bare feet in the grass.  But for many that’s the stuff dreams are made of. 

I’d open the window as wide as it will go but, hmm, ‘things’ of a buzzy, bitey, stingy nature will be too tempted by my tastiness, and Signor Four-Paws might be happy to come in that way but will want out via the front door. Not to mention opening/closing the window is fast becoming a ‘can’t do that’ task. It’s not the same and being completely the same as full enveloped by outsideness. 

My limitations are feeling quite pointed today, it will pass.

I’ll attack my hard toe nail with the clippers instead…..

 

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*

 

FSH awareness – Oh I am so aware

Today is #WorldFSHDay …. I am one of the 2,000+ that has this condition. It dictates everything everyday and every night. There is no treatment, no management and no cure. Also there is little support, understanding or assistance from the people and organisations designed to do otherwise. It’s not photogenic, it’s not compassionate, it’s not escapable.

I pull no punches.  There is nothing remotely comfortable about the constant struggle to just exist.

Since it’s noticeable onset when I was 4 FSH has slowly robbed me of all my achievements, my purpose, my abilities and my pleasures. I can no longer work, drive, or play piano; be spontaneous, be independent, be principal in choices. Things I can do have a strict time limit otherwise there are consequences of energy and strength.  I can only go anywhere, do anything I want, if and when someone else is available.

What are you wearing today? Did you choose it? All my clothes are dictated by FSH, right the way down to my panties and bra. I never choose something because I like it.  Let’s move on to food, what made you decide on your lunch today? Something tasty? Did your decision depend on whether you can lift it to your mouth, or whether you can easily swallow it after chewing, mine did. 

Spend a moment considering this, try making a cuppa without bending your knees, hips, back, standing on tip toes, without reaching higher than your shoulders, using only your thumb and first finger to hold anything. That is the level of concentration and unsteadiness I live everyday, doing everything, anything.

A bad day is when it takes 3-4 attempts to get stood up from the three only places in the world I can (my bed, my toilet and my sofa spot), a struggle is when it takes 5-8 attempts, if it takes more than 8 don’t ask. My reward for the effort? To do it all over again and again and again, after all how many times a day do you stand from sitting?

It is a one way street, once a muscle set degenerates, there is no recovering it, it’s set to get worse. Tomorrow could be the day my muscles no longer support me, the next day could be the day I experience breathing difficulties, the day after that could be the day that……..you don’t want to know. Then again it could be next week, month, year, just one day.

Right now I am having to figure a solution about my desk. I cannot get up from the chair, but I do not know whether I can use a chair that rises. I have to find a local company that has such a chair that they can bring to my abode for me to try insitu. Then I have to decide whether it is worth the £3,500 ($4,500) expenditure, (plus service and maintenance costs).  Did you notice that paragraph said ‘I’? That’s because my needs cannot be met by the standard, limited catalogue of equipment available via my Occupational Health team.

Hey ho, must go, I need a pee and to make the journey productive I’ll put my mug and plate on the chair I use as a frame and hopefully get them as far as the kitchen.

Ain’t life fun!

 

When Enuff Is Enough

It doesn’t have to be a Friday thirteenth for a day to test, frustrate or just get the better of me. Major Murphy, Sargent Sod and Field-Marshall Fate must have had a conference and decided to wage war on my patience, resilience and strength.

Last weekend I sat with note pad and pencil and went through every page, paragraph and sentence of the website, noting down edits, amendments, corrections and general tidying that needed doing; I made notes about what to do for a whole new page, a significant addition to a page and a complete reconfigure of the site menu and presentation of the music bio. That came to seven pages, and I haven’t even touched the photos and videos (may not sound like it, but I enjoyed it, I was making headway and planning).  Tuesday morning I sat at the desk and worked through one page of straight forward corrections, about an hour and a half.  The cost for doing that, I couldn’t get up from the desk, no amount of umph-ing, trying, willing, wishing or expletive resulted in a successful up, so I did the chair shuffle to the sofa and get up from there.  In the afternoon I worked on my crochet project and the price for that was struggling up-ness from the sofa, loo and bed. My reserves were flat, I’d had enough, I get angry, I am not wanting to dance on tippy toes across a high wire, just stand up, not rocket science is it, but boy do I have to work at it, every, single, time. Count how many times a day you stand up, imagine having to run up strains every time, you’ll quickly start thinking “Do I need to get up and do that, can it wait and then do two or three things together”.

Wednesday I created some new graphics, another hour or so at the desk, but I cheated, Big Sis was here so she could lift me, when she arrived. Yesterday, I began the task of creating an eye catching new page sub menu, making sure the HTML I write is correct to every . > and “.  After a little more than an hour I sat back, looked hard and hit the delete button, it was crap. Great. I am sure my frame of mind is clouding my vision for this new page, so I cannot see what I want to work towards.  Again, I couldn’t get up. Again the chair shuffle to the sofa, an afternoon spent on the crochet project, and again difficulty getting upright, but hey, on the bright side it only took me an hour to get from sofa to kitchen with loo stop rather than the two hours on Tuesday.  They say finding the positive is a good thing, I hate that kind of thinking, because it does nothing to get my arse off the wooden toilet seat. I am all about the practical, it’s ingrained. 

For some time getting upright from the desk has been an issue, and I do not see a way around it. I’ve tried tweeking my method, restricting the duration at the desk (I’d prefer to be there two or three hours), it makes no difference. I think the desk height is a tad higher than the draws I use beside the bed or the sink beside the loo. Can’t change any physical aspect but I need to be able to sit at my desk, there is enjoyable work to be done, I can occupy myself and feel some satisfaction. I cannot use a laptop as I cannot hold my hands/arms over the keyboard to type. I need my desk. 

I know there are battery powered toilet seat risers. I know there are seats that rise and tilt, we see the tv ad often enough, but things that tilt will throw me to the ground. But easily useable desk chair that behaves like a dining chair, is there such a thing.

Historically I have known the work-a-rounds to manage, how equipment can help, but in this day and age, with my level of deterioration, is there an answer other than ‘you cannot do it anymore’?

 

The Cost Of Investing Hope

I am pondering….. contemplating….. wondering….. considering…..

You see, this all hinges on at what point do you resign yourself to the not possible and suffer the mild case of disappointment and despondency versus the okay lets seriously plan out and cost doing, to then have it fall at a hurdle that you cannot overcome but cause and suffer greater despondency, disappointment and depression; because the probability of this coming off is slim but if it does, well, its an experience to dine out on for eons.

This is going to sound vague but, there is a mild possibility of an event a few hundred miles away which if asked I would jump to attend.  It will involve train1, train2, mad dash in taxi across city, train3, taxi to overnight accommodation, taxi to and from event, taxi to train station, train 4, mad dash across city, train5, train6, get home, collapse from exhaustion.  It will involve a degree of hanging about and rather more standing about [well not for me obvs I’m in my chariot but pusher would be standing about].

Now, if I was an able bodied Joe, even if one that has to avoid steps and stairs, there would be no issue. I’d be on my way, even if it was relatively last minute.  But I’m a crip in a chariot, who needs a carer, and to book the one and only wheelchair seat on six specific trains, to find wheelchair accessible taxi’s and wheelchair accommodating accommodation, as well as clarify venue’s facilities for wheelies, etc, etc.

Still, it is all rather hypothetical at present, but this is what deteriorating conditions do to you. Something you did not ask for, do anything to get, slowly takes away all options, skills, desires, dreams and renders you sarcastic, bitter, annoyed, pitiful, selfish, and many other such words all covered with a mask of humour and a smile.

Going would cause strain, discomfort and heaps of anxiety but the gain of the experience would outweigh that, but the potential pain caused by the collapse of the dream would be reasonably significant and there would be no gain, no compensation no alternative to offset it.

This post is not about going or getting there, it is not about me and how I cope, it is about at what point do you just have to learn to live with the fact that some dreams will come with a nightmare attached. To avoid the nightmare let go of the dream.

I feel a “Violet Elizabeth” type tantrum in the air ………