My Life

I grew up in suburbia and  wanted to be a teacher from 5 years old.  My first teacher, Mrs Leonard, gave her all to the children she taught and in fact, her warmth and gentleness have influenced me more than I’d realised until writing this.  As a teen, I qualified as a nursery nurse and worked as a nanny for a year before training as a teacher.  I met my husband/ best friend at university and much to everyone’s surprise we’ve actually stayed together (19 years in Nov). 

My first class, in 1999 was in a difficult, multicultural city school. I loved it! The diverse group of 4-5 year olds; or the ankle biters as they’re often called, were a perfect match. I stayed for 11 years.  I learnt quickly: teaching changes rapidly. I was a Tigger, not an Eeyore; even though my first year uni housemates had nick-named me Rabbit (we all had Winnie the Pooh names before it became a thing)! I was soon being fast-tracked as a leader, but then marriage and 2 children came along and I went back to work part time; although I could never quite be JUST a class teacher. 

For years, I’d had bouts of sickness that we put down to allergies etc. (we now know they were migraines). Then I got really sick; facial pain so bad, I couldn’t lift my head. Pain killers and preventatives building up, I pushed myself back to work way before I should. However, I could stand up, talk and kind of teach, so I drove through the dizziness, nausea and pain. I was constantly plagued by this low level headache but I was determined not to let this stop me! 

My Adventures

Life carried on in a similar pattern for the next 5 years. Although, adventure came back to us. I finally found some relief when I saw a cranial osteopath. We started socialising more; went for days out: to zoos, museums etc. Joel and I started going to see live music again; our shared love of music, so important to us. We made memories in Italy, France and experienced many life changing moments during our trip of a lifetime to America and Canada.

I was in my mid 30s and lucky enough to live in a village in the Sussex countryside. Then we bought our dream house in 2013: a huge Victorian place with a big country kitchen; island and butler sink. We redecorated, the house was stuck in the 80s, except for THAT kitchen. Simultaneously I was promoted to Early Years and Key Stage 1 (4-7 year olds) leader in a new school; basically organising all the 4-7 year olds and their adults. I was brimming with ideas! 

And then our everything changed.

I became ill in January 2014. A headache that came one day and has never left. Often, pain so bad I can’t walk. Worse than being in labour most days. Being chronically ill, can stop life for a while, but maybe it’s a new adventure. One that has tested us to the core, but proven we’re strong, and reinforced us a family unit; making us formidable. People call me brave, I don’t think so. But it’s not just me that has to be brave: Joel, Zeke and Luca are just as bold, they fight this battle with me; grieving, angry, resilient, sad and determined in moments; how it affects us all in turn.

My Friendships

Being chronically ill tests mine and Joel’s relationship regularly. He works so hard; doing 3 jobs! His stressful day job as head of a large team; being the main carer; looking after the kids, cleaning the animals and doing anything our PA can’t do. He is also my unpaid carer; pulling my socks off because I’ve no energy left at night or helping me to the bathroom when I struggle with those measly few paces and helping me shower when I can’t. 

Someone told him the other day that he was a better man than them, that they didn’t think they could stay if it was them! Joel was stunned, but relationships often fail when a partner becomes chronically ill. Our love for each other has grown, if anything; even though our life has changed. I’m only brave enough to fight, because of that. The trust, understanding and continuing need to make each other laugh, assures me I’ll always have that friendship and love.

its not what we have in life but who we have in our lifeI am blessed to have kept so many friends. One friend even gave me a toy of Merida from the film Brave, when I had my skull surgery! I’ve made so many wonderful new friends through social media. It’s great to know that someone’s always in the iPad; a huge relief ?. I can rant, because someone will have been there; I can be silly and they laugh with me (well, so they say); I can cry and someone will always listen and give advice. My network of friends that help us out in myriad ways are, as always, our life savers. They help our fragile world to keep spinning on its axis.

The subject of losing friends for me is still raw and I question it often. Talking to my online friends; I’m lucky, but a best friend, that I’ve shared live changing events with, disappeared within weeks of my illness becoming serious. It still hurts deeply. Then some friends disappear for months and message out of the blue, expecting a meet up. I was tolerant until recently, but If they were true friends, then they’d have tried to find out how I was sooner. In fact, one ‘friend’ ignored my text telling her all about my operation! I have only so much energy a day. Now, more than ever, that I’m fighting anemia and an under active thyroid too, I just haven’t got any spare enrgy to waste on anguish. 

My New Life, friendships and adventures

So life, we know, consists of lots of sleep in the day and little at night; leaving not much time for adventure! I’ve been bed-bound for nearly 6 months; my biggest adventures are to Cambridge to see my intracranial hypertension doctors; one being to see The Wizard to get a piece of skull removed. Now an adventure for me is to get downstairs. This has become the highest sought adventure any of us could ask for. We all get so excited if I make it and have a massive snuggle up on the sofa.

I want to get some of what we had back; just enough to join in with life again, have a pinch of adventure. We’re clinging to the hope that we might make it out to a cafe over the school holidays. However, I have a Cambridge trip for a CT scan with contrast, so The Boss Man can study the intricacies of my brain ? and decide where to put the stent. This 2 1/2-3 hour journey each way wipes me out for weeks, so this and Easter weekend visitors may delay that. But, it’s all worth it for my biggest dream; to listen to music again! A stent might make it a reality. Let the next adventure begin, with the support of my family and friends, I can take on all that life has to throw at me! 

Maybe I am brave, if it leads me to be free, then I’m in!

Migraine blog - she who is brave is free

Published in Chronic Migraines, Illness / Disability, Intracranial Hypertension