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Tag Archives: Muscular Dystrophy

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!

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8 Comments

Posted by on June 20, 2017 in General, Life

 

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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’?

 
9 Comments

Posted by on April 14, 2017 in Grumble, Life, Projects, Tech, Website

 

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The Cost Of Investing Hope

mdtop

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 ………

 
6 Comments

Posted by on August 30, 2016 in Uncategorized

 

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Resigned to Resign


On Monday morning I sent an email of resignation to the charity which hosts the public online forum I moderated. 

In truth it had been on the cards for the past twelve months but I did not want to leave my fellow mod gal pals. The old forum (phpbb) was becoming unstable, there were database issues (spammers reposting others posts as their own), increased spam posts and our volunteer guru was getting nowhere trying to get the licence renewed (which meant a lot of saving info and uploading new software etc). Someone (not us) had the bright idea of starting over, creating a new forum (WordPress) carrying over the existing database and hopefully regenerating interest (from both the charity staff, social media and users). That fired us up, gave us some positives for the future – how naive we were.

The new forum took eight months to ‘prepare’, alright I appreciate this was not being done in-house by the charity but by their third party webby peeps. There were repetitive emails about what was required back and forth. Eventually after numerous deadlines passed the new forum was launched and a significant number of repeatedly told requests were not present and after another eight months, they are still not.  I defy anyone to find a forum that does not have a search function!

The forum has completely lost its community spirit, it’s friendly, supportive, welcoming feeling. For me a sarcastic resentment was setting in, time to let go of it all.  I will admit that I felt a little dejected for the resignation being accepted without dissuasion or much else and discovering I had instantly been ‘de-buttoned’ made it known there was no notice period.

Maybe it’s a protest resignation, but I know the protest will change nothing. Maybe I’m tired to having yet another chance squandered by the third party. Either way, I’m done.

 
5 Comments

Posted by on May 13, 2016 in General, Projects

 

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Buy something unique (shameless plug)


Looking for that something different, special, unique … A keepsake to mark a milestone? Well, look no further and at the same time help raise funds to help disabled adults live independent, purposeful, lives.

Oh How Lovely Gifts
A gal pal and fellow MD-er with boot loads of creativity and boxes of supplies, plus an amazing talent has started selling her handcrafted treasurers and the profits go to an excellent cause.

So readers, bookmark the site, at some point you will want to send a card that’s a bit more than a £1.99 mass produced bland piece destined for the recycling bin, and here you’ll find the ideal something.

 
1 Comment

Posted by on May 12, 2016 in General, Projects

 

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Is It Right To Choose To Die

Right-to-Choose

I am going to broach an emotive and contentious topic, the right for someone to choose to die.  There have been numerous heart wrenching articles and stories across the past few years of people in severe distress and disability wanting to die, tales of family and friends who have gone to Switzerland with a loved one who had visited an euthanasia clinic being arrested for accessory to manslaughter or such crimes.

I fully appreciate that there are numerous people and organisations who for what ever reason are fully against this.  I respect you for those opinions and beliefs, I can understand your reasons for that belief but cannot agree with you; and if you find a differing opinion offensive or are someone who can be easily offended – now might be a good point to stop reading and move on.

Apparently there is to be a debate in the House of Commons regarding a right to die.  Essentially if an adult is given a terminal diagnosis of less than six months to live, they can, after the relevant assessments and declarations of two or three doctors, make a representation to a Judge to be able to die, at a time of their choosing, by medical means [overdose of some type, presumably].

Should an adult person have the right to choose to die.  Why not? While the Hippocratic Oath includes the ethos “first do no harm”, prolonging a painful, terminal condition surely has to be harmful, if not physically definitely mentally harmful.  Don’t we already have a form of this, where patients can ask and be assigned as DNR, they have a control over the degree of action taken to resuscitate and revive them.  The reported Liverpool Pathway care protocol of the elderly, which have been mismanaged and now withdrawn.

Maybe, unlike many, I am approaching this issue from a different angel to most.  I have a medical condition that can, and will, have an effect on the duration of my life on this insane lump of rock.  Do I want to be kept going regardless, as a dribbling, mute, shell, with no control of my extremities or toileting, being assisted to breath, spending each an everyday as nothing more than a spectator – no.  Life is not just about quantity but also quality, but that can only be gauged by the individual.  Which makes it incredible difficult to legislate it for.

Sometimes in the wee small hours when my mind is being particularly belligerent I wonder whether if someone needs 24 hour care as they cannot tend to their own needs, they need someone to take the tops of bottles, or push the pills from blister packs, maybe hold the glass while liquid is supposed through a straw and so forth; if the person decides they wish to end their life, but they cannot because a third person is needed to push to pills fro the blister pack and hold the glass steady, is that discrimination? Access to an activity is blocked because the disabled person cannot manage it for themselves.  Bound to be a tricky point of law, and an example where laws render each other illegal and there is no outcome.

Some might consider this the beginning of a slippery slope, that while the initial legislation may be for six-month terminal cancer adults, would be expanded to include others, for example dementia sufferers, those with life-affecting conditions, to those who have some form of control over persons with non-coms-mentis capacities.  You may be right.

 
3 Comments

Posted by on August 15, 2015 in In The News, Life

 

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Bruises hurt!

Back ache

Took an an unexpected trip on Tuesday as I was slicing up the pork for my new quick Strogg recipe.  It was curious because I knew it was going to happen, I could not fathom out why (which I usually can) and couldn’t stop it. The thought going through my brain was “I hope the radiator is not behind me”, thankfully it was not, my round kitchen bin was, it’s no longer round, more like eggy oval.  The four inch serrated knife in my hand, was still clutched in my hand.

After calling my Sister to come get me up from the floor, I sat waiting, still not able to work out the cause of the unbalancing, my hand had not slipped on anything wet, my foot or toe had not stood on anything shinny or slippery. I had been successfully slicing the meat in the same position until I wasn’t.  Annoyingly odd.

When Sister arrived she walked in and said “Didn’t your Tigger bounce work?”, my reply was that I must have let it all loose too soon.  Anywho, once dropped onto the sofa, with my necessaries adjusted, I continued with dinner, a little shaken but none the worse.

Then the bruises made an appearance, my derrière where I landed feels bruised, as does the spots when my metal framed lumbar back brace must have been jolted into my flesh, my right shoulder and elbow feel jarred, which is curious as neither of them made any contact with anything.  Now the edges of my diaphragm hurt.  

Just a pained reminder of deterioration.

 
10 Comments

Posted by on February 20, 2015 in Uncategorized

 

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