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Wednesday, 30 November 2011

Just Call Me Sleeping Beauty?

Having not left the house for two days, I'm afraid to say that I've not got an awful lot to report this evening!
I have frustratingly slept away two precious days of my life- and although there may little change there, the related frustration of this never ceases to sadden me.
Once again, I could not sleep for love nor money last night and after hours of reading on my Kindle, watching numerous episodes of 'House' on my iphone and perusing over Twitter on my laptop, I finally fell asleep at 11.30am THIS MORNING!
I am exhausted from this insomnia which is plaguing my life right now. Despite this, I do know part of the reason why this is so bad. I also know a way in which I can improve this situation in part.
Why? You may me ask, am I not doing so then?
Pain is the main factor in my insomnia, but the secondary factor is most certainly the itching and tickly sensation that affects my skin all over my body every day and more prevalently every night!
The itching is a symptom of my Arachnoiditis, (my degenerative neuropathic condition), as well as also being a side effect of the copious levels of morphine that I have to consume each day for the pain also associated with this!
When you are talking about dealing with hideous chronic pain, itching may seem a very trivial symptom to complain about- and you're right- in comparison, there is none!
However, when it is nearing 3am and you have taken extra morphine in order to cope with the pain and you are then subjected to this uncomfortable itchy sensation at a heightened level because of the said extra morphine- I can assure you, this becomes a very horrid situation where reaching for the antihistamines that will relieve these feelings to some degree, enough to allow sleep to take me- suddenly seems very appealing!
The problem, ( or more aptly- one of many problemS!), occurs in the fact that these antihistamines cause severe fatigue, on top of the fatigue caused by my morphine and other drugs- coupled together these drugs cause me to sleep easily through to 1- 2- 3- 4- even 5pm!
I can set up a myriad of alarms and phone calls from my husband in order to wake me from this deep slumber- NOTHING makes a difference!
What can I say- just call me Sleeping Beauty!
Facing the difficult journey ahead that Garry and I plan to take in order to hopefully become parents, (if that is, that I am deemed physically able to do so), I've found myself paying even more attention to this issue than I perhaps usually would; as at the end of the day, what baby is going to understand that.. mummy had a tough, painful and uncomfortable night and that they may just have to hang on for some food as mummy's medication make her sleep lots?
Yeah, exactly!
Faced with this catch twenty two, I have done the only thing that I can, and adjusted the only variable possible in this situation.
Over the last two weeks, I have removed the antihistamines from my life, with a very clear and dramatic affect- I was able to be awake when I set my alarm to make me so! Hurrah!
It's a small thing that we all take for granted, but when you are unable to wake when you plan to, it becomes an extremely frustrating and unbearable situation!
For the first week of this medication change, despite only getting between 3 and 6 hours sleep, I was able to face the day at a normal sociable human hour.
Second week of my experiment and things have not gone quite so well to plan. This itching is really not very nice and really affects my ability to go off to sleep.
Another factor is that once I am awake in bed in pain or itching and the clock is edging ever closer to 2 or 3am  and the house is quiet and the world seems a very lonely place- the anxiety and worries in my life tend to bubble to the surface with dramatic and devastating affect!
And there we have it- when the anxiety, itching and pain concoction has gotten that little bit too much, I reach for the antihistamine. However, when you're only taking these pills (which have a side effect of fatigue), as a last resort when it all becomes too much at 3am- you tend to not wake up to 1pm minimum!
What do I do?
With no other non-drowsy antihistamine options available that are strong enough for my symptoms, the only option I feel that I have is to explore those options which involve me controlling what I can with my mind!
I'm planning to now try meditation in a hope that I can cope with my physical symptoms even a fraction better and probably most importantly control my emotional symptoms as much as is at all possible.
1.24am and I'm nearing the end of writing my blog, (it probably doesn't help much that I find it best  to write at night when everyone else in my flat has gone to bed), and I am nervously anticipating the difficulties of the night ahead!
These night time problems, are yet another unseen, unknown and often underestimated element of my life with my disability.
When I catch up with friends or family in the daytime, it is so easy for them to see me dosed up on my morphine and recovered from my difficult night and to take away a false perception of how I am doing.
I have no problem with this, and the reason that I do dose myself and pretend that I'm... ''absolutely fine honest!'', is because I often want to avoid always talking about my depressing situation and I want people to think that I am fine- but the issue comes when you need the same people that you are misleading to understand why you have to let them down last minute for a dinner or a drink as you are unwell!
For me there are SO many elements of my disability that I hide from even my closest of friends and family.
Who wants to be sharing the many personal and sometimes embarrassing problems that the high levels of morphine cause and plague me and others with disabilities with every single day?
Who wants to always be talking about a subject matter that is on the whole quite depressing?

On that note, I am conscious that this has not been the most concise, captivating or upbeat of posts and for that I sincerely apologise.
The perfectionist that I am learning, with the help of my 'shrink,' to identify myself to be, wants to stay another hour or two and rehash this post to a much more articulate and engaging piece; but the sensible and responsible person I am working on making myself, is urging myself to promptly switch off the laptop and stop putting off the inevitability of bed!
Wish me luck. I'm off to count those sheep!

Tuesday, 29 November 2011

Reason to Smile- Being The Change

I hope that you've enjoyed a healthy, happy and productive day today.

Today's 'Reason to Smile' post, ties in a post from last week which included a couple of my favourite quotes.
One of these quotes was by Mahatma Gandhi-

'You must be the change you wish to see in the world'.

Nothing epitomises the spirit of this quote more than this 'Reason to Smile' story I found this evening.
http://news.bbc.co.uk/1/hi/8257153.stm
I hope that you enjoy it. It has certainly inspired me to do the best that I can tomorrow, particularly in my quest to establish my charity, which aims to provide help for those like me who have become disabled and consequently need emotional support to accept and deal with the difficulties of the life ahead of them.
What change do you wish to see? More importantly-what are you going to do about it?

Monday, 28 November 2011

Owwwwwwwwwwwwwwwwwwwwwwwwwwwwww!

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!)
This....
....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 lifĂ©', 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...