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Tuesday, 19 July 2011

The Truth Hurts?

Admit it, if you’ve ever had to be confined to your bed due to pain that is invisible & incomprehensible to those around you; or if you have become disabled & your life is now unrecognisable to that of what it used to be; there is a small, very human & no doubt extremely private part of you, that you’d rather nobody ever knew about, that sometimes thinks to yourself & dearly wants to shout out to your husband, wife, mother, sister, brother, nurse or carer...
‘How would you be coping with this situation? Would you be perfect? Would you get annoyed, frustrated, infuriated, angry? You betcha!’.

I’m aware that this may be a little shocking or uncomfortable to read, but I really want to stress that this is most definitely NOT personal & is purely a knee jerk reaction to an intense situation. We are all human & frustration or various derivatives of this feeling are valid & justified & definitely not to feel ashamed of.

Each night I struggle with these feelings when I reflect upon my day, (or lack of it if I have woken up at 6pm because of my morphine), & how I’ve interacted with my husband, carer or my parents who I recently had to stay with for a couple of months whilst my husband was stolen by the RAF! Always interesting when you are 28 years old, have lived away from home for 12 years & are married!
I desperately want to be nice, kind & accommodating to the person/ persons who feed, wash, comfort me etc.; but when my pain score rapidly rises through the high teens, (those of you who’ve ever been treated in a hospital will be familiar with the pain scoring system of 1-10), & my morphine has numbed my brain, yet sadly not my pain enough to enable me to just close my eyes & shut out the world)- being civil let alone kind & personable suddenly becomes an extremely trying task.
No one wants to bite the hand that feeds them, let alone the one that is there to care for you & most importantly administer the morphine; but I profess that your mind & certainly your temperament is not your own when you are experiencing pain levels through the roof, or frustration levels that have never been rivalled before in your life.
My mum says that there is no worse feeling than that of having to watch her only daughter suffer emotionally & physically & that if she could, she would take it all upon herself to have it taken away from me. My mum is so wonderfully kind, supportive & selfless, so when I find myself communicating with her in an unacceptable fashion, it is really rather embarrassing & devastating upon reflection.
You always hurt those closest to you- isn’t that what they say? Well I’ll go with that. Those closest to you are the ones who are with you at your lowest because they want to be & you want them above anyone else in the world to be there in return.
The friendship group you used to go out for dinner with or spend August bank holiday weekends with in the sunshine over a Mangers or ten- although great, are unlikely to understand your frustrated pain fuelled rants & moans & would no doubt disappear into the black hole that was your old life prior to your illness or injury if they were to witness such frank displays of emotion.

Despite all of the above, I genuinely believe that I am not a bad person & simply one subjected to extraordinary pressure & pain. This is most certainly not to say that I believe that I have an excuse for behaving the way that I have done & sometimes continue to do to my loved ones; I’d much rather not at all, it’s merely saying- walk a mile in my shoes & then pass comment on my actions.
Relationships with parents & friends are obviously hugely important, but I feel probably the most equally treasured & affected relationship of all- my husband, who was at the time of my car accident, merely my boyfriend of only 6months.
It was a very intense six months nonetheless, when an RAF pilot & a Virgin Atlantic ‘trolley dolly’ meet, time when both of you are in the same country at the same time becomes extremely precious: & it was precious, more precious than any other relationship I’d ever had. This was it, he was ‘the one’, & thank God for that! Who else would have ever been able to cope with what lay ahead?
The careless, carefree, light-hearted, fun loving, young  pilot, who was always one of the lads, blessed with never having anyone ever have  to rely on him in anyway; was suddenly subjected to me having to rely on him for my every need emotional & physical. A shoulder to cry on & a shoulder to literally lean on to bathe & toilet & change my position in bed.
I would not wish this upon anyone. True, it has made us stronger but at others almost ripped us apart. Although there are carers groups; I feel that there should be better emotional support for partners & for couples together. There should also be counselling as standard for parents & siblings & also for the patient to have counselling on what it is to inevitably be the loss of many friends. I’m sure many of you are chomping at the bit to say, ‘well love, that’s just life. We all lose those more superficial friends over time & end up with a treasured few decades later’. But imagine experiencing losing them all at once, alongside your career, your mobility & your dreams in their able bodied form.
Yes, it isn’t the end of the world & I’m not ungrateful enough to think in my rational & lucid moments that all this is. Positives will grow, where once only existed negatives & despair; but my point is to stress that before those beautiful flowering positives blossom, there are lots of dark holes & pits of depression to climb out of & when you’ve just become disabled, climbing out of holes becomes increasingly difficult!
Please join me in my quest to raise awareness for the need for better psychological care for those who become disabled through illness or injury, motorbike accident or Multiple Sclerosis. Please email me at kazreader@hotmail.co.uk to share with me your story of your transition from able-bodied to disabled & the emotional support if any that you received.

 Mum & I's relationship pre- 29th July 2006!

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