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Wednesday, 8 August 2012

An Exciting & Daunting Prospect

Right, enough excuses, enough procrastinating & enough letting life get on top of me!
I'm back and I'm ready to ramble!

Well, that's my rant to myself over- so how are you doing?

Although I could reel you off a list of excuses for my absence as long as your arm, they would not be an awful lot different to those that I have given you before-
"...my pain has gotten on top of me.... I've been battling yet another virus/infection ...I'm struggling with the balance of writing my blog and registering my charity... I'm struggling to keep up with my friends & family who have patiently stood by me whilst I have had to spend the majority of the last 6 years stuck at home..."- the list is endless, as unfortunately is the amount of days since I have posted it seems!

Frustratingly enough, logging into the site this evening after some time out of the picture completely with another frustrating health set-back, I have discovered that I have THREE posts that I have written for you over the last month and a half, but for some random reason have not uploaded!

Aghhh- I'm so annoyed and SO incredibly sorry!

Anyway, enough now of the apologies, lets get on with tonight's message...
The last couple of months have been crazy in many respects, with extreme highs such as my recent holiday to Greece, coupled with disappointing lows- with medication exchanges and subsequent increased pain!
This eventful time has also brought about the addition of new challenges and excitement in equal measure- the most notable of these probably being the fact that after years of being passed around numerous medical consultants like a hot potato- Garry & I have finally made the very difficult decision to try for a baby.

The reason that this decision has been more complex than for most people of our age and finical circumstances, is that as a result of my injuries, my consultants have been wary of whether I would physically be able to carry a child myself and if indeed that were possible, what the implications of going ahead with such a venture would mean for my degenerative neurological disease.

On top of the above factors, Garry and I have also had to weigh-up the risks of going ahead with a pregnancy whilst taking daily slow release morphine medication and neuropathic pain tablets on top of many other daily essential medications.
Having been told that coming off of such medication would be completely unrealistic now, (let alone ever), Garry and I have spent the last couple of years hunting down papers on relevant studies and information on drugs trials, as well as consulting foetal medicine consultants and pain consultants to name but a few medical professionals we have bothered!

The result of burying ourselves in this research and worry, has been a realisation which I believe becomes more common as one considers themselves an adult- that being that sadly there are intact no fairytale answers in life; no magic cures and most significantly no clear cut black and white definite direction in which to proceed in.
Life is complicated. Life is confusing and life is bloody scary and incredibly messy!

This later point in reference to life not being black and white and instead a grey area of frustration- also applies significantly to my degenerative disease Arachnoidits.  As a rare and incurable condition, it feels like ahead lies before us a daunting barely trodden path- and one seemingly only travelled by the brave few people prepared to talk about it openly.

Sadly there is also not enough information as to the extent that my neuropathic pain medication may have on my potential unborn child. As for my morphine medication, that is going to mean that my baby will be born addicted to morphine!

Did you flinch at the sound of that statement? Because I can tell you that I certainly did!

Do you now perceive me to be selfish to want to put my need for a child above any potential problems that this may cause an innocent life? Because once again, I most certainly do!

I know!  Even writing this down in black and white makes me feel like my head may explode again and I feel sick to my stomach that these points have to even be considered; but trust me these are not alien feelings to me, Garry or our closet friends and family! These are sadly questions and dilemmas that we have been battling with for years now.

This apparent never-ending cycle of emotional hell, was recently brought to an end by my wonderful pain clinic psychology consultant who made me aware that in her opinion it was blatantly clear that my desire to attempt to have a baby was by no means going away and in contrary was in fact intensifying with each passing monthly session.

My wonderful consultant also made me realise that these perpetual dilemmas of...

?   What is 'THE' right decision to make? 
?   Should we accept that we shouldn't try and have children of our own as there are just too many    risks to my health and worsening disability and more importantly the health of my future child?
?   Or should we put our faith in God's hands and accept that even the most 'normal' and 'healthy' couples can experience difficulties, deformities and dramatic circumstances when trying to have a baby and ours is just an increased risk and not a certainty?

...have been considered, debated and drawn out so much, that going over them much more would not magically eventually give us the right answer, but would instead cause us both more anxiety and aggravation that was frankly affecting both of our mental and physical health.

That being said, why shouldn't we just see where this road may lead us? We know not yet whether we'll be lucky enough to even conceive at all; but one thing we do know after having talked things through with my counsellor, is that should we continue to procrastinate about this issue forever, it is almost certainly going to make us miserable and even tear us apart, as accepting and living with disability alone has caused us more grief and strain than we could have ever anticipated as a couple.

Either way, the time has come to decide what to do for our own sanity's sake: and...

We have decided to try for  baby!

Since the very moment that we made this decision to go ahead and try for a baby- ( a monuments statement simply to express in black and white, as it alone is a 'normal' thing to say and do, and let's face it 'normal' has not been a common word in either of our vocabularies since my accident and subsequent neurological disease!)- we have both felt a physical weight lift from our shoulders!

We now feel so free of the shackles of speculation that had begun to consume us both, that is not to say that the 'what ifs?' have passed. Garry particularly as a military man struggles with the thought of the practicalities of life as a disabled parent and how on earth I am going to push a pram whilst driving an electric wheelchair and juggle my relentless pain with the unavoidable demand of a newborn, let alone 'run' around after a sugar hyped toddler?

It is exactly because of these worries that I am choosing to speak so publicly about what is for many a very private time.
From day one of considering potential parenthood with a disability, both Garry and I have struggled to find examples of those who have walked this path before us, which is why we are choosing to speak so openly in the hope that we may be drawn closer to those who have had babies whilst taking strong opiates and neuropathic medication and those who have successfully given birth and parented whilst battling with physically limiting illness or disability.

For those of you in similar situations to ourselves, we hope to pass on any information that we find along our journey towards parenthood.

So far the two most helpful sources of information and inspiration that we have found are at a parenting blog called the Hedgehog Blog, following Katie, who has cerebral palsy as well as two young children.


...whilst my second recommended read is The Disabled Parents Network


I once again apologise profusely for this, one of my longest gaps in my correspondence with you. I hope that this has given you a small insight into my life of late.

Well, hopefully with these technical uploading hitches well behind us, I hope to write to you MUCH more frequently in the coming weeks and months and keep you updated both of my journey and any related information that we may stumble upon along our unknown path ahead!

Wherever you are and whatever you may be battling with, be it physical, mental or emotional pain, I wish you peace and I pray that you may be surrounded by love and support.

Should this not be the case, I urge you to seek help through your doctor or The Samaritans where you can write, call, email or visit any of their wonderful help centres.


Should you feel that you can class yourself within a bracket of medical definition, then here are some addition means of support...

*   MS Society    http://www.mssociety.org.uk/

*   Spinal Injury Association    http://www.spinal.co.uk/

*   Apparelyzed    http://www.apparelyzed.com/spinal_cord_injury.html

*   Macmillan     http://www.macmillan.org.uk/Home.aspx

*   Limbless    http://www.limbless-association.org/

*   Age UK   http://www.ageuk.org.uk/money-matters/claiming-benefits/disability-benefit/

*   Scope    http://www.scope.org.uk/dial

*   Child Disability    http://www.child-disability.co.uk/