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Wednesday, 3 September 2014

Life of late

I have been meaning to write for some time now, but with one thing and another, obstacles have been repeatedly placed in my way.

As is so often the case, I currently have in my draft box numerous half written posts- but after a flurry of wonderful and very kind comments to the blog and my Twitter page from readers old and new asking when I might be able to write my next instalment; I thought it time I find a way to clear said obstacles and get on with actually publishing one of these unfinished symphonies!

In the interest of actually being able to press 'submit' before circumstances force me to abandon my typing once again, I shall refer back to a post I have tried to submit a  few times now lately...

 9th August 2014.

Quite a year, culminating in quite a week.

Last Thursday my gorgeous little miracle girl turned one!

I could quite easily spout off all of the cliches of how quickly the time goes when having fun etc. and all would be very accurate, but all I want to say is how blessed I feel to have had this amazing year.

The year ended with a bitter sweet day as whilst celebrating my daughter's special day I sadly lost the second baby I was carrying.

We are fine and after a week or so of monitoring I am beginning to feel much better with this thankfully, but through all of the investigations to explain why I have felt so unwell since this event, I've just been told that I have got a blood clot on my brain.

I came into hospital for something else entirely and incredibly they've detected this blood clot- that's pretty bloody incredible if you ask me!

Not least because if I hadn't have had this other issue and they hadn't have found this clot I would be in a much worse state.
Currently I'm sat in limbo. It was a poor, out of depth gynaecologist who broke the news to me yesterday instead of coming to discharge me from her ward for the weekend, as I was eagerly expecting her to do after my 'better to be safe than sorry CT scan', I was then informed of what they had found.

As warm and sympathetic as she was, she went on to say that this is way beyond her area of expertise and that she would get a specialist to come and talk to me, and that's where we are right now- waiting for said specialists to decide what to do with me.

We have been waiting some time now but the treatment for the clot commenced straight away and I have since seen other Drs as I have had a couple more of these weird dizzy spells I have been feeling all week.

So why am I writing this in my blog right now?

A.) Because whizzing around after a one year old who walks and runs better than me, I have been struggling to find time (and energy!) to post on my blog for too long now.
B.) Because I am currently stuck in a hospital bed playing a waiting game whilst my poor husband sleeps in a hospital chair besides me and with naff all else to do in here, I'd rather keep myself busy right now! (There is also an element of catharsis in this I feel!)
C.) Because I started Discover Disability to talk about the impact of illness or injury on an individual and their loved ones, and I'd say that this pretty much falls into that remit!

Once again, like my spinal injury I feel quite OK myself right now, my fears and worries are for my family and loved ones.

I worry that I blurted to my husband (who was waiting for a call to come and collect me!), who then completely in shock had to drive to my bedside.

I worry about my Mum who is currently running around after the crazy, nutty one year old at home who I miss with all of my heart!

And I worry about, and feel guilty about the crazy one year old who isn't able to have her mummy to give her cuddles when she wakes and won't do for frankly I don't know how long until I find out more information.

I've felt in shock, denial and then deliriously giggly.

Right now I feel frustrated that we aren't as yet getting any more information.

Blood thinning treatment  has begun to help stabilise and attempt to disperse the clot.
Waiting for specialists to have a meeting with other specialists from another hospital to decide their plan of attack.
Just praying lots and enjoying my visits from my baby girl, even if it is hideous waving her goodbye!

... Fast forward 48 hrs and how life can surprise you...

So after waiting what seemed like an eternity for the  neurologists to have a meeting with the other specialists from across London to review my scan we have the most amazing but unexpected  news…

The 'clot' has now been determine to actually be an Arachnoid Granulation.

What does this mean?? Well, short term, treatment for the blood clot can cease and I can get home to my daughter tonight!!!!!!!!!!!!!


Thank you God!

Long term- ????????????????????????????

Two weeks on…..

So a fortnight on and I have been back into hospital to see the neurologist.

The lump of fluid on my brain has to be looked at more closely to decide just whether it is an Arachnoid Cyst or Arachnoid Granulation and in turn whether that is linked to my Arachnoiditis and/or the many symptoms I have been experiencing lately.

Life is a little strange at the moment.

My family and I are in a bizarre limbo once again.

We are obviously elated that I don't have a blood clot on my brain and relived to have me home, but sadly life is by no means back to normal.

Since the miscarriage I have been experiencing a number of symptoms which lead them to investigate and scan my brain including disturbed vision, dizziness, headaches, fatigue and collapsing to the floor with no warning.

Sadly these symptoms have not improved and in some elements have become notably worse.

Mostly I am confined to my bed or the sofa until they complete their further scans and investigations, and because I have these periods of not quite feeling in the room and that I am about to pass out,
I am currently unable to be alone with my daughter.

With a husband with a demanding job in the military this naturally has its own complications, but we are thankful to have incredible friends and family who have been travelling from all over the country to come and be child care for Florrie and nurses for me and I also have to say that this is where 'the military family' come into their own, pulling together to help us with everything from child care to a good old chinwag with tea and biccies!

The reason I chose to share this difficult time with you on my blog, (and despite my very frank and open blog, I did debate for a while whether to share this right now as we are still living through the uncertainty rather than reflecting back upon it as I have done previously about my spinal surgery and Arachnoiditis)- but then it occurred to me that that is precisely why I should be writ in g this right no- because Discover Disability is about writing about the emotional impact on individuals and their families when they are affected by illness or injury, which is exactly why is happening right now.

 This current situation reminds Garry and I so much of the period of limbo we lived through after my car accident and watching one another try and cope right now brings home to us both just how needed Get a Life! Foundatiopn's goals to set up tailored emotional support for people who become disabled through illness or injury and their family really are.

Despite having lived through me becoming disabled, we are both noticing those difficult emotional strains on one another once again, as we both naturally revert back to our default coping mechanisms.

I'm sure all will be fine. There is a possibility that the fluid lump on my brain may just sit there and cause no future harm and that my current symptoms can eventually be explained away by the fact that the huge hormonal change in my body from the pregnancy and subsequent miscarriage triggered this reaction in my body and it may be that as the cyst or granulation is sitting on the Arachnoid membrane of my brain, that this is linked to my Arachnoiditis I have been suffering with since my spinal procedures.

Either way, we hope that I am able to return to my usual level of functionality asap and that the impending scans and investigations I am due to have over the coming weeks enlighten us somewhat as to what is going on and can be done to help.

My time with Florrie is more limited than ever at the moment as my visual disturbances and 'wobbly head' symptoms are restricting me from being alone with her or even being able to play and interact with her in my usual way.

This enforced rest time in bed both in hospital and now at home has once again given me time to think and reflect.

I am so much in my life to be thankful for, not least the friendship and support of my family and friends and my readers of my blog, for supporting me on my two biggest achievements in life- having Florrie when I was told that it was almost certainly not going to be possible and starting Get a Life! Foundation  when I was told starting a charity with no finical backer would be one of the hardest battles of my life.
Its true both are very difficult indeed, but both are hugely important to me and your support has been and continues to be what keeps me going through the more difficult times.

I thank you for this and I hope to share more news from Get a Life! once I return to full strength.

Until then, I think of you facing your own uphill battles as we all have them as I remind myself in times like these of the Epictetus quote we use on the Get a Life! Foundation website...

"It's not what happens to you, but how you react to it that matters."

With a little help from my friends (make that a bucket load!) and some tools learnt along my path to creating our help sheet for Get a Life! Foundation, I choose to react to this current situation by attempting to stay calm and take one step at a time whilst I live through this period of limbo.

I try to focus on all that I still have, which may not be some of the freedom like driving and whizzing about in my wheelchair that I have only  recently regained since losing them after my car accident- but I  still have the most important things to treasure and savour, like visits, calls and cards from friends and precious moments spent cuddling my daughter and husband and dog- the best medicine ever if you ask me.

I hope to be in a position to update you again very soon.

Take care,