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!

 

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.

 

OpenReach? More like ClosedFist!

I am stuck in the middle of a futile tug of war.  I am a Sky customer, OpenReach say I have an ‘unstable’ phone line which means from time to time it will exhibit a confusing range of symptoms.  The internet will drop off and takes ages to reconnect, it may remain connected for micro seconds or day long hours.  The phone might crackle, it might not, it might at the beginning of a call or during the call, it might kick the internet off. There is no consistency.

Reporting it to Sky is a tedious faff, because you cannot report it online, you have to telephone them [on the dodgy phone line], then you go through a series of unplug this plug it back, unplug this plug it back scenario – each one meaning terminating the call and waiting for them to call back. This results in a report Sky send to OpenReach, which they take their sweet sweet time doing anything about and never ever call me back to say its been done [probably because I might blast them a new one!].  Seemingly my system behaves and a month later we start the merry-go-round again.

*sigh*

All I can do is keep reporting the fault to Sky, all they can do is report it to OpenReach and all OpenReach do is change the bit of sticky tape and not truly ‘fix’ the issue.  No point switching providers as whomever I am with still relies on the same infrastructure, which results in reporting things for OpenReach to botch.

In the grand scheme of things it is trivial, but like a hangnail or a lash in you eye, it irritates, it rankles, it is unnecessary if only it was fixed right the first time.

Off to call them yet again …….

 

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 ………

 

Missing Morpheus

This is me today ….. I waddled off to bed about 10 last night, started a new book [My favourite husband – light rom-com] ….. closed my peepers around 11.30 ….. tossed and turned ….. snoozed and dozed ….. got up for a pee around 3am ….. settled back down ….. napped ….. listened to neighbour answering his vibrating phone a little after 5 ….. tossed and turned ….. snoozed and dozed ….. knew I needed another wee so gave up and arose just about 8.30.

I need a block of sleep, the proper deep stuff, the kind I usually get between oh say .. 5am and 8am.

If you require sensible coherence from me today … you might be wise to wait, sometime next week could be good, potentially.

 

Fighting Negative

  
I lead a negative life.  I am in a negative environment, with a very negative health condition, in a world where negatives are abound and few positives enlighten the gloom.  Dealing with a constant debilitating muscle disease that is essentially slowly paralysing me, does take away all the joy and skills that I once hung my happiness upon.   Add to that the wintery weather, dark days and grey rain and that is essentially why I have been rather awol of late [what do you mean you didn’t notice, sheesh!].

Yes I would like a project, something to learn and sink my teeth into but I know I lack the self discipline and energy to push through the self imposed barrier of “can’t be arsed”.  A gal pal on Facebook posted a picture of a crochet project and I would have loved and enjoyed making it for her but the cost of postage and packaging the finished article to her would be astronomical, plus the yarn over here is a little more expensive.  If I was going to the States sometime I would have seriously considered making it and mailing it once over there, but that is not going to happen.

If-if-if-if-if-if ….. …..

Blogging is fun when there is something fun to write about, an amusing tale or experience to share and I desperately do not want this area of my human interaction falling into the despondent resignation that other areas have.

We have a few theatre trips planned this year [Gisele, Tap Factory, Hobson’s Choice and The Bodyguard], my BFF is coming to visit in a little over two weeks and there is a June London trip in the planning stage, these are little lights, but the days can be long when you’re sitting still, feet up, resting muscles, answering quiz questions, when your brain is still raring to go unimpeded by the physical restriction.  Watching when you’d rather be doing is a double edged sword.

Now, I’ve been seated at my desk for about an hour or so, I wonder how many attempts it will take to get up-stood so i can go pee and then make lunch [also see to beef stew slowly stewing on the hob *drool*].

 

 

Ticking off

  
It has been a while since I have blogged, multiple reasons for that, general disinterest, lack of topics, lack of enthusiasm, here on WP I still feel like that dog barking in the woods; you know the one, if there’s no one to listen does he still make a sound. 

Anywho, last night Big Sis, her BFF and I went to see The Nutcracker ballet to say it was astounding, sublime, magical and mesmerising would be a gross understatement.  Full of passion, lively moment of fun (love the Mouse King being cheeky), there were over thirty members in the cast, add to that a sinfonia complete with harp and celeste and it all added up to quite something. Off to see the play “An a Inspector Calls” next week.

Slowly jobs are getting ticked off the list, I balanced my bank account, reconciled the credit card (must remember to pay it, lol), finally after three weeks of trying and getting error messages managed to top up my mobile phone balance, booked the next round of theatre tickets, the Christmas card list is done, present list amended, Christmas shopping list started, MD forum checked, emails sifted & sorted. Nearly finished some Christmas gift crochet, almost sorted Big Sis’s Christmas things that everyone else is doing.

Still need to contact my niece about a hair harvest, her Christmas list and a couple thing I need her to get for me (down side of always having Big Sis with me when shopping), oh yes and pay the credit card bill, lol.

The weather has taken a turn towards chilly, rather a shock to the system back to cold hands and feet/legs. 

That’s about it really.