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!

 

Listless Listeria

Has it already been over a month? (Yeap) You sure it’s not been a couple of weeks? (Nope) Guess I should revisit my to do list then? (Yeap) ….. Hmm, this is not going to be pretty.

• Work on the web site – phase one done, phase two being mulled over.
• Carry on with crochet project – tedious brick wall hit, stuck.
• Try and keep things tidier – that never lasted.
• Research Greenwich trip – tickets bought, all ready.
• Clear and tidy desk + draws – wellllll, should do better.
• Chase up Neuro Consultants Letter – hmm, not even started.

Okay the web work was a big job (pages of alterations, additions and amendments), phase two is reworking the photo section. Another big job as the new photo albums need adding, each separate photo needs resizing, often © marking, as well as captioning.

Desk work has a new problem, I cannot get up from the seat. I’ve been tentatively googling disabled office chairs as I’d like one to raise me to the standing position, but they are pricey and I need to try insitu, see what other issues it throws up. Then I could spend a lot more productive and play time at my computer rather than the iPad.

I’m slightly side tracked by sourcing a mobile beautician who can come and scrub the be-heck out of my tootsies, make them happy. 

Must dash – the late evening sun shine is across my feet causing my eyes to close and mind to wander.

 

What’s my X for?

Well, a little around three hours ago Prime Minister Theresa May has called for a General Election and I am already tired of the media reporting and I’ve got another seven weeks until Election Day  (June 8th) and the harping and bemoaning after the result. Is there such a thing as election reporting fatigue?

But this does drag up a recurring question – exactly what am I voting for with my all powerful X?

• Is it Mr(s) Somebody
• Is it Mr(s) Somebody representing This Political Shambles Party
• Is it This Political Party
• Is it all of the above
• Is it none of the above coz we don’t know

People griped about not having voted for TM to be PM, well I’ve never had a paper asking me to select a PM. I’ve also never had a tick box for a coalition so absolutely nobody ‘elected’ the Government in 2010.

So, batten down the hatches for political fliers filling up the recycling bin. Go raid the charity shops for cheap DVD’s to avoid the endless media drivel. Deactivate your social media accounts as opinionated ‘erberts get hot under the collar over trite trivialities.

Already the media reporters have nick-named this the #BrexitElection, well only if you (the media) harp on and don’t give equal time to issues such as education, NHS, social care, police and justice, defence, taxation, benefit system AND how changes can be implemented, costed and monitored. But I am a stupidly common sense semi-intelligent person, so I know that ain’t gonna happen.

*sigh* if I go missing again, I’ve gone into hiding, or hibernation, or been committed…

 

I Think I Am Bad For Business!

Whilst twiddling my thumbs in the wee small hours, a thought percolated in my noggin. Apart from the last place everywhere I have ever worked no longer exists!

While at school the obligatory two-week work experience was done in the admin offices at the local psychiatric hospital. Many years ago the former naval hospital was refurbished into numerous plush, sought after, town houses and apartments.  During my studies at College to get letters after my name I worked for a period of time at a fabrication business, which was taken over by a larger one and then everything moved away (also the winter snow meant College closed but I still went into work through the snow drifts).  After completing my courses (and getting those letters after my name) I went to work in a section of the Department for Education, hmm, yeah, well, that was partially disbanded and partially amalgamated with other sections.  Off to a speciality advertising agency, if you needed your logo and details printed on things, we sourced it, pens, key rings, clothing, carrier bags, travel adaptors and umbrellas, manic in a word, well it was the eighties. 

When that went to the wall, off I hopped to a temping agency, that too no longer exists, nor do the companies they sent me to, from holidays camps, to builders merchants, to security companies, to car sales, to ship chandlers, to law firms, accountants. Some were for a week or two, some were months or longer, most were where the first temp ‘upset’ things so I was the rescue party.

Next stop a Baronial Estate, the job I enjoyed the most, it had the greatest variety. I’d grown up with the family, it certainly topped up my anecdotes supply.  Recently the new 4th Baron (I worked for the third) has decided to no longer operate that area of the various businesses on the Estate, another one closed.

I’d moved on to a couple of companies contracted to work for the Ministry of Defence, both now gone and forgotten.  Finally onto another Government Department section, which is still shuffling the bureaucratic red tape even if the actual building I worked in now has a different function.

Hmm, I wonder where I could put my ‘business black widow’ skills to good use, join the Labour Party maybe or the Trump Administration, how about the banking industry ……….. then again, it might be a wise thing I am now classed as “unfit to work”, I doubt the post brexit economy could cope with me.

 

Father Time Is Doing It Again…

Only last week it was still January, next week is half-term for the school kids and marks the middle of February!

After watching Big Sis take down the decorations on 2nd January it felt that Christmas was still in the air but watching a programme that I recorded before Christmas, seeing the festive adverts again it felt as if the season of Nöel was something coming in the (distant) future rather than the recent past.

2017 is going to do it too, isn’t it?  That thing where January has seven weeks but the rest of the months will only have three. It’s awful, just six weeks until the clocks change, a little over four months until the longest day. The year is going to zip past if I don’t try and get a hold of it.

 

Does preparation breed complacency

It was something of a surprise yesterday when I turned on the BBC1 lunchtime news to find my home town a main feature! Didn’t think the rest of the country knew anything existed east of the M1.  

Numerous warnings had been issued, plans were being implemented, preparations were unfolding as the east coast braced itself for a weather phenomenon that seems to be happening more often. A mixture of super high tides, plus full moon, plus strong gale force north/north-westerly winds were converging to push the seas at the land and cause significant flood risk damage; add winters rain, sleet, hail and snow and all things being as they are, things were rather grotty out there.  Sand bags were being filled, flood boards were being screwed into place, police were door knocking advising people to evacuate their properties and where the evacuation centres were.  TV crews were everywhere looking for that photogenic story, the housebound nonagenarian and the cute cat being housed upstairs on a warm duvet, the neighbourly community spirit, the over exaggerated precarious deathly risk. 

Back in 2013 when similar weather got together there was significant coastal and inland flooding and there were those dramatic images of bungalows falling from the crumbling cliffs into the crashing seas. Then, as yesterday, plans had been implemented but possibly too little too late; the sea enveloped the promenade and cascaded into many seafront businesses and homes, the surge along the river breached the walls turning roads into babbling brooks. In the aftermath there were calls for better protection and better warnings and these were heeded, which was a factor in yesterday’s action.

Thankfully last night the surge was not as high nor as strong as had been predicted, few areas were flooded and there was minimal damage to property. Today’s local papers have a handful of washed up debris shots. It ‘could’ have been far worse.

One thing that did strike me yesterday throughout the days numerous reports and the social media up-dates from plentiful agencies, news sources and groups, there seemed to an edge of complacency that because all the warnings had been issued, that gates and blocks were in place, with the Police, even the Army in presence, alongside Environmental Officers and Coastguard personnel, everything was going to be okay and that joe public did not need to do anything.  I’ve not seen any comment or columnists complain that yesterday’s reaction to the potential threat was overboard, but I am sure there will be. It’s a damned either way situation, prepare and its doesn’t happen it’s over reacting, under prepare and have flooding and it’s not doing its job properly. 

But I am concerned, the more often these flood preparations are implemented and no significant flooding occurs, the reaction should be “phew, it worked, we are safe” but will more likely be “they always say/do this and nothing ever happens I’m not doing this next time” which really will put people and property in danger.

 

Christmas Honours

(I corrected the spelling mistake 😉 )

As some may remember from past posts, my Sister issues gratuities to her ‘staff’ (aka her husband) at Christmas. Since they were married he has made a cup of tea for her most mornings and since retiring he has done the washing up and also become the potatoe masher. 

The first year ‘the Lady of the House’ wrapped a gift of favoured chocolate as a thank you for the year of service.  The second year contracts of employment were issued with warnings that dereliction of staff members duties would result in deductions (tea boy already knew forgetting the sugar is immediate dismissal), so masher lost a choc for lumps, washer-upper for not doing it lost two chocs, sneaking into a ferrero roc her box became quite a surgical task.  The third year secreted into the familiar shaped containers were miniature tools for each staff member (we even made a miniature fairy liquid bottle, found a milk jigger, and a mini masher). 

The fourth year was trickey, you see with extra additions to the family and with austerity measures things were tight, so the Lady of the House wrote to Santa for help, Santa himself was struggling with the extra work load and wrote to the Red Cross, on Christmas Day there was a very authentic looking Red Cross Parcel under the tree (we even worked out how to tie the string properly!).

This year, we really thought we were all out of ideas. Then we hit on the idea of a long service medal. Creative conjuring continued through the summer, resulting in an official looking letter from Buckingham Palace awarding the staff the Grand Order of Washer-upper and Masher and Tea-boy (GO WaMaT). The post letter signed by ‘HRH ER’ (that’s household recognition honours, edible requisitions) complete with gold engraved medal on a red, white and blue ribbon. Induction into this grand venerable order brought with it an annual endowment of favoured chocs.  The medal is being worn with pride, lol.

It’s the sort of silliness that adds fun to the festive day, but our ideas barrel was well and truly run dry.