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Monday, 28 November 2011


Ow. ow, ow, ow OWWWWWWWWWWW!!!!
Is this complaint due to one of my hideous migraines caused by my medication? Is it due to the pain in my back? Is it my nerve damaged legs?
Nope, to all of the above- ( although the latter two are most definitely present and aggressively making themselves known to me right now!)-  this evening, my primary issue is that my mouth is full of stingy, throbby, irrationally irritating mouth ulcers and I have been unable to leave them alone for about four days now and have subsequently bitten my mouth to pieces- Aghhhhhhhhhhhhhhhhhhhhhhhhh!
Like a warning signal that goes off that little bit too late to be of any use- I ALWAYS find that I get a mouth full of ulcers when I do too much.
There you have it folks, (ie. mum, dad, husband, best-friend, brother, sister-in-law and shrink!)..I admitted it. ''I did too much this week'.
( Please see pictorial evidence!)
....plus this...
....plus this...
....plus this...

...equals this!
The trouble is that on top of doing too much in my days this week, I have also not been sleeping at night until about 4.30am and in fact on Saturday night, I did not fall asleep until 8.30am Sunday morning as I had been out the night before and was consequently in horrid pain!
My primary problem in life is that general, simple everyday tasks require SO much more effort and strength now, than they did previous to my accident in my ''normal life'' pre 2006.
I was that person who annoyingly could not lie in on a weekend for love nor money! My days used to be full to the brim. I never stopped I loved life!
Bizarrely to most- a normal day for me would involve working a twelve hour flight, ( as an air hostess for Virgin Atlantic)-  land in LA, have a quick shower and change and be down in the bar in 15 minutes flat. ( It's amazing how the thought of an apple martini at the end of a very long flight, can affect the speed of this otherwise laid back process in my case!)
After drinking cocktails in the hotel bar for an hour or two, I would then finally, ( after being up for near on 20 hours at this point), collapse into my hotel bed for an hour or four, before waking up at 5am (local time ),to drive to Big Bear mountain to refine my snowboarding skills for the afternoon!

A quick snooze on the drive back to Pasadena- I would then shower and change again, (in a similar time frame to the few hours previous!), to hit the gorgeous bars of downtown West Hollywood!
The bars we used to get invited to as Virgin Hosties, ( yes  I did have the a-typical blond hair, bleached teeth and a slender size 6-8 frame at the time- not too much of a stereotype then?),  were simply amazing and crammed full of the 'who's who' of Hollywood!
Many a time I would have to pinch myself just to realise I was in a different continent, let alone the places I would visit!
That was of course, until one summer's evening in 2006, when this dream life that I was living at a hundred miles an hour, was over in an instant- as one simple mistake/lack of concentration, by the girl who crashed her car into mine- changed the path of my life to a very different direction.
Now, in this new phase of my life, a shower and change is a MUCH longer and more arduous process and involves using disability aids to make the very act even possible!
The strength has to be summoned from the extremely depleted energy reserves in the first place- before then taking 5-10 minutes to ensure that all of the products and equipment I need are in place, because there's no popping out to grab your shower gel if you forgotten it!
The shower (or more often than not bath), takes about 10-20 minutes- the last five of which, are spent trying to psych myself up and summon the energy and strength to do the physical process of getting out of the bath/shower, wrapping a towel around myself before collapsing on the bed.
Then when all of that is done, I am totally and utterly spent!
Laying on the bed, my energy tank is well and truly on empty and I just need to lay still for half an hour minimum and often have a dose of morphine to try and deal with my pain and most importantly reboot my energy system!
Make up, hair and most importantly putting on some clothes- then uses up the little strength that I have acquired from my reboot!
Add blow drying into that equation and I then end up in minus figures in terms of the energy count and I'm invariably back in bed for an hour minimum!!
Blow drying aside- all groomed and dressed and ready to hit the town; do some work or meet some friends and I am nothing short of knackered and riddled with pain to do so!
This is what happens as a result of all of life's daily tasks- be it dinner, shopping for dinner or getting ready for bed- they now all have the same energy value as two hours in the gym used to back in the days of my "normal" life: not forgetting that all of the above is only possible at all on good days!
A problem occurs in the fact that I do not easily accept that these simple tasks that I previously took for granted as non-events in my 'old lifé', should be off limits or restricted- so I am defiantly just trying my best to carry on regardless- perhaps a little in denial?!
The result of this stubborn behaviour is that I inevitably frequently 'do myself in' and end up with my pain exacerbated to the point of unbearablee heights!
I consequently have to take more morphine as a result of my actions, ( which then brings on more fatigue), and my sleep is often hugely affected by both pain and depression due to the fact that I have once again been defeated by my nemesis.
The additional anxiety that is present in me right now, is in my fear that this situation will develop into the situation of 'perpetual poorliness'- which is where I do not wait and give myself time to recover from my pain, fatigue or reoccurring infections, resulting in them never going away for months due to my impatience!
I appreciate that I have tried to articulate how much more energy is needed for a standard day for somebody like me in a previous post-   http://www.discoverdisability.com/2011/08/just-cant-keep-up.html , but I have no qualms in returning to this subject matter now and no doubt many more times in the future- as this is one of the most frustrating things that I and many other people with disabilities experience daily.
There is no doubt that life is tougher since my accident/surgery/illness-disability, both physically and emotionally.
I don't know if I will ever fully accept that the amount that I used to think of as a normal day's work/living is no longer possible without rendering myself confined to my bed for weeks!
How do you change the habits and expectations of a lifetime?
I frankly have no bloody idea- but I gladly welcome any ideas from folks of how to do so!
If you have struggled to even get up or washed this morning then my thoughts are with you. Even more so if you were unable to do these tasks at all!
I think I finally did so at about 2.15pm today!
It is definitely hard for those around you who live at 'normal' speed and strength to understand fully the frustration of living this difficult life- but I have learned that it is even harder for them to do so if you don't tell them anything about it and they are consequently disappointed when you have to once again cancel on them for that drink because your energy, strength and capacity to cope with pain levels have simply run dry.
Writing also drains me more than such things used to pre- disability, so on that note, if you don't mind, I'm going to sign off and crawl into bed and pray for sleep!
Until tomorrow folks...

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