Tag Archives: subdural hematoma

Fitting the puzzle pieces together

After 15 years at home watching and waiting for the ticking timebomb inside my baby (teengirl) to once again explode, and as I tried to find the final jigsaw piece that would finally explain what caused her brain haemorrhage, I got a job. And the one thing I feared would happen, happened.

A week after I started what I thought would be a routine hospital appointment for teengirl to be referred turned into a diagnosis of hypermobility and a diagnosis that teengirl is within the specturm for Ehlers Danlos Syndrome (EDS) – a rare connective tissue genetic disorder with several different types featuring many various symptoms and signs and experiencing varying severity.

Teengirl’s type is as yet unknown but given her symptoms and medical history – of which there’s so much more than I’ve shared here – it’s leaning towards Type 4 vascular.

The life threatening type.

Teengirl has been in pain for several years now. Our previous GP repeatedly fobbed us off telling us the burning pain in her knees when walking up hills or stairs was just growing pains and gave her exercises that caused more pain in her knees.

New GPs at the surgery assured us it wasn’t growing pains and referred teengirl for physiotherapy. The fantastic physiotherapist couldn’t understand teengirl’s pain as it reacted and responded unlike anything she’d ever seen before. The only thing she could come up with was perhaps it was linked in some way to the brain haemorrhage.  And so followed 6 months of knee clinic where teengirl joined all the pensioners who’d had knee surgery.

But her knees continued to hurt and knee clinic made the pain worse. Soon she was in experiencing the burning sensation pain in her knees walking on the flat..

Teengirl is due to sit her GCSE’s in 2015 and has mock exams next month. So when, in the summer, she began complaining of horrendous pain in her fingers and wrists when she was writing and also pain in her toes we returned to the GP.

Teengirl’s always had ‘weird’ fingers – exactly like her dad’s – they appear to dislocate on their own, she can bend her thumb right back to touch her wrist and bend her fingers in strange ways and at each joint, they also hyperextend.. Her toes are very similar.

This time a hospital appointment was requested with the GP suspecting rheumatoid arthritis or lupus or something else in that vain.

The day of the appointment dawned and off teengirl went with her grampa (I couldn’t get the time off work in my new job). She was upset when I got home from work but also happy because the diagnosis means she’s not mad, the pain she’s in every day is real.

Last week was her first occupational therapy appointment – one I had to fight for as they initially refused her referral!!! But once we were through the door they were amazing and teengirl’s OT has recommended she uses a laptop at school rather than write especially during exams. Teengirl can’t write for longer than 5 minutes without experiencing extreme pain and her handwriting is illegible.

Next Friday teengirl’s got a heart scan at the Evelina at Guys then a few months later a follow up hospital appointment where I will be pushing for genetic and skin tests because she needs a definitive diagnosis even if it means knowing she has a life threatening genetic disorder.

Unfortunately most painkillers don’t help and there’s no cure for either hypermobility or EDS.

**I am at the start of a long journey of education about Ehlers-Danlos Syndrome (EDS). Teengirl is still a long way from definitive diagnosis of type – if she ever gets one. Obviously I’ll keep you updated of our journey.

Right now, I still don’t know all the ins and outs, the facts, the procedures, guidelines or even the correct medical terminology to use in relation to EDS.

So please don’t rely on my blog for facts, please visit Ehlers-Danlos Support UK where you can find out all the information you need.**

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9/9/99

I wrote this blog post back in August this year. After writing it my life changed so suddenly and so completely when, in the space of one week I got a job, that I didn’t get to post it. So here it is now…

Fifteen years ago on the 9/9/99 my life changed irrevocably when teengirl, or baby girl as she was then, got sick.
Less than a week later she was in a neurosurgery ward fighting for her life having already had one brain surgery.
And yet despite that serious surgery doctors were still convinced my baby wouldn’t survive that Thursday night.
Then when she did they didn’t expect her to survive the weekend. Every time they told me this I told them they were wrong. And they looked at me like I was either mad or I just wasn’t hearing them.

Two more brain surgeries later, two blood transfusions and after an e-coli infection in the fluid around her brain failed to beat her the doctor’s finally began to see the strength I saw in her – small smiles began to brighten their faces when they came into her room.

Six weeks later and my baby who was repeatedly expected to die was sent home from hospital looking like her head had a fight with a stapler and a cross-stitcher.

And I attempted to breathe out after the truck that hit me every morning drove away. But the breath was stuck firmly in my stomach, a knot of hard boiled air just sat there.

Before teengirl got sick I chased my dreams so hard that sometimes I hit them with such force I didn’t recognise them through my daze. My twenties were filled with adventures and terror; highlights and lowlights; fights; parties; joy; happiness; discontent.

In my twenties I got married – twice. Engaged 3 times. I also got divorced twice. I had two children, lived in France, Spain and America twice.

I had a great job as a national newspaper news journalist before teengirl got sick. I worked hard, it was stressful but damn I loved it and was actually pretty good at it. News stories I broke made front pages around the world, news stories that I’d uncovered changed laws and saved people’s lives.

And it hurts me to admit, in fact it terrifies me to admit, that I haven’t worked since the 16th of September 1999 and neither have I chased my dreams. I retreated into a space of tightness, exhaustion and fear where I felt safe despite constantly feeling afraid. A space where I had as close to total control as I could.

For the first year after teengirl came home I was a terrified wreck. Neurosurgeons had no idea what caused her subdural haematoma and they’d no idea if it would happen again.

The day I took her home from the hospital teengirl was a ten and a half month old beautiful baby girl with a shaved head featuring black stitches in a criss cross pattern down one side and a multitude of staples running from the front to the back of the top of her head that made people stare in disgust.

Just minutes before teengirl was discharged doctors told me she was a miracle. That I should be thankful she was alive. Then they told me they didn’t know what effect the brain haemorrhage would have on her: they didn’t know if she would walk or if she would talk, what she would be able to do.

Now you all know that teengirl can walk and boy can she talk, but those first few years were terrifying for me.
Doctors told me not to wrap her up in cotton wool, to let her go, let her fall, let her bump her head. When she walked at 18 months that hard boiled breath that lived in my stomach grew wings and flew to my throat with every tiny little wobbling step she took.

I bet you can guess how fast those wings of fear beat when this tiny little miracle with the head that was too big for her body opted to run everywhere instead of walk. Oh good god, how many times could one little girl fall over?

I couldn’t go back to work. Teengirl had first got sick when I was at work. I don’t think I ever forgave myself for not being there that day.

Year one featured terror, year two fear and mild depression, year three more depression with a side order of hope, year four I was diagnosed with PTSD and so on.

And I just never returned to work.

For the past 15 years I have stayed at home with teengirl and teenboy and then baby boy when he came along four and a half years ago. I have been firmly and fearfully ensconced in my comfort zone, living half a life – living an illusion.

Last week I did an NLP exercise that involved looking back 5 years and writing down what my life was like. I then wrote down where my life is now before writing down where I want it to be in five years from now. I was absolutely horrified to realise that my life today is the same as it was not just five years ago but 15 years ago.

And it turns out that I’m actually incredibly unhappy in my not so comfy comfort zone. What will I do every day when babyboy starts school?

I can’t continue to do the same thing every day and expect different results. It’s time for change. It’s time for me to climb out of the space that holds me too tightly perpetuating the hard boiled breath fixed like a fist in my chest, for me to stop trying to control the past, present and future, it’s time for me to let go – to rediscover my dreams and begin to chase them again.

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