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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!

 
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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Split Feet

  
When you are sitting down and feeling all wobbly there is usually a good reason.  Blood pressure, earthquake, you’re on a boat on choppy waters, these things don’t apply when you are sitting at your bathroom sink washing your luscious locks.  My bathroom is a wet room so the floor is slanted for drainage and can catch the unknowing visitor off guard, but I was wobbling a little more than the norm.

Gazing at the feet on my shower stool the answer became aware, the industrial grade mounded plastic foot had split. After twelve years of being sat on and shuffled about, the tension has become greater than the moulding can handle.

Off to the great God Google to find out if these solid feet have a posh name (they do, it is ferrules) and then to the other God eBay to find replacements.  I was going to try NHS suppliers but even with VAT deducted (there’s an exemption for disabled people purchasing equipment) and the postage and packing added (which has VAT added, did you know that?) it was a mini-mortgage.

Anyway, hopefully *fingers-crossed* I won’t need to use the stool over the next week, it is my alternate means of getting up-stood from the toilet and I have to use it when I wash my hair. To be safe I ordered four ferrules, because if one is splitting the three companions are likely to as well. Hurry up Mr Postie, Tuesday cannot come soon enough.

 
4 Comments

Posted by on April 14, 2016 in General, Grumble, Life

 

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Clinomatic Relapse

Clinomania
I love my new bed (Silent Night with a gelactiv mattress), not only is it comfortable and supportive, it keeps me warm, roasting infact.

Now, if I could just get some warmth back into my hands and feet, my afternoon might be more productive than sitting here shivering!  I think I might have to succumb to temptation and put the heating on. 

 
2 Comments

Posted by on September 20, 2015 in General

 

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MoJo got Apathy

GetUpEarly

That fleeting period of energy that rolled up the sleeves and got stuck in has buggered orf, leaving those easy five minute jobs undone and ….. well …. they’re just undone.

I have been ‘street viewing’ around the Houses of Parliament for a suitable lunch nibble eatery for our June visit, not having much luck, only found a cafe nero 😦  It seems that everyone stands up and bevvies themselves in the bar and then if you’re able you stagger up impossible stairs to eat over priced nosh.

Tickets have been booked for The Nutcracker ballet in November.

A couple of strange sore spots have appeared on my right big toe, I do hope they are not chilblains.

The saga of getting a new lumbar brace is going on and on more than ariston ….. all I wanted to do was avoid an unnecessary appointment, pfft, shall not bother in future!  Short version is this, [in February] rang Orthotics and asked if I had to have an appointment, they said no, just a GP note will do; so I wrote out my cheque and popped it into the post. Telephoned GP left message, got called back that he needs to see me [why, he sin’t going to touch me, can he phone], made an appointment, spent 1 minute 30 in his room to say “Please write to Orthotics for a) new brace and b) refurbish existing brace. Ta auresvoir’.  Last week get an appointment from Orthotics for middle of May [?]. Rang Orthotics asked what the appointment is for, was told “to be measured”  by which time my cheque will be out of date and for the wrong amount.  Brace will take 4-6 weeks, my measurements are unchanged.  Four months and a lot of wasted time, effort and money, for something that should take 4 weeks.

4pm, I have cooked a stew, done one lot of dishes, second lot are soaking, written this blog and that is the sum total of my effort for today.

 
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Posted by on April 9, 2015 in Uncategorized

 

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