Autumn Earquinox

Let me see

• Leaky nose ….. check
• Crunchy sounds when chewing/yawning … check
• Dulled hearing in left ear … check
• Feeling chilled … check

Great!

My sinuses are adjusting to the autumnal temperature by clogging up.  I’m out of ear unclogging gunk and cannot reach the olive oil.  I have tiny tubes apparently so they get clogged easily, I’ve often thought that the stickiness of my secretions could out do the most effective of commercial glues. Maybe when I wash my hair in the morning the warm soapy water will swill things out.

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UnMindFull

I’m not sure I can trust that last bit either…….

Tuesday is a case in point ….. I woke up thinking it was Thursday.  When chit chatting to BFF she remarked about something ‘a week tomorrow’ (meaning Wednesday) I remarked “Oh has it been moved to Thursday?” which would mean I thought that today was Wednesday, but my Sister is here for on a Wednesday never a Tuesday and she had not been here.  As the conversation continued and turned to the evenings culinary delights brain went ‘oh goodie fish fingers tonight’ which I have on Fridays and I knew I was having chicken curry because it was defrosting in the kitchen.  I give up!

A week tomorrow (Friday’s still follow Thursday’s, right? And today is still Thursday? Okay just checking) my BFF arrives for a couple of weeks. I haven’t finished the cot blanket nor untwizzelled the troll hat yarn.  I haven’t sorted additional groceries nor accumulated any good films (might have to do trawl through the charity shop). In truth I haven’t done much of anything. Although I have booked the carpet cleaner lady.  I’m fed up of feeling not myself, exhausted, energy less, heavy, weary and generally fatigued. It’s taken me all week to put this blog together.

*sniff-sniff* I know I’ve turned off the beef stew that’s been percolating on the hob, but now I am questioning whether I actually did!  I craved boiled eggs for lunch, so I must be ill. You see whenever as a child I was ill (be that with a cold, ear ache, stomach bug, chicken pox) my dear old Mum would stand beside my bed looking concerned saying “I don’t know what to make you for lunch, how about an egg (I groan), a boiled egg, (I groan), poached egg, (I shake my head), how about scrambled (I shake my head more) but fried won’t be nice for your tummy, I don’t know what to make” (how about toast, chicken soup in a mug) … I cannot face eggs when ill but usually ended up with a couple of boiled ones.  I had boiled eggs for lunch.

Now to get motivated into a book review, is “It was alright” descriptive enough, entice you to either read or avoid the title, thought not.

Brain is saying I need a pee, maybe that but is still working. 

 

Jumbled aLl up fEelinG

In general I’m a person of habit and routine to some degree but also flexible, but I didn’t realise how fragile my usual habits are, how easily things are disrupted and how difficult it can be to get back into the familiar.  I cannot exactly blame anything (like Wimbledon, the weather or such) it all comes down to my own will power, which has been on the wane for sometime.  

My haphazard sleeping has become more erratic, might be because I have not been reading or because I’m too hot or because I am not sufficiently mentally and physically tired; I’m unenthused at meal times, which might be because I’m tired of my often used recipes; I’m not fussed about staying in or going out, whether there are chores or errands to be done or not;  I have almost finished the current crochet project, but it’s been a concerted effort.

I am not really sure how to go about un-diss-ing my combobulation. 

Even this blog post, I started it Friday but cannot get into my creative flow.  *sigh*

Right, it is no good, I just have to, even if the outcome is not a solution, no point procrastinating any further. It’s got to be done. 

 

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 ………