...because of cluster headaches

THANKYOU so so much to all who responded to this blog post the 1st time I posted it... Your response overwhelmed me, both of us. So many of you offered to help us in our journey to have a baby. We have thought long and hard about it and we are now realising that we need the help of you our cluster headache family. We have set up a 'Go find me' page and we are excited to let you know it's address https://www.gofundme.com/katie-shell

For those of you who are knew to this blog please read below as it's the hardest one I've ever written

I listened to a psychologist talk about the cluster headache experience recently at the OUCH UK conference.

I listened intently to his words and his words sounded familiar, they rang so true… so real!

He talked about ‘a slow erosion of the things people hold important’ and  ‘a guilt and frustration in our change in our role with family and friends’.

I turned to my wife and said ‘I want to hug him’. I am a psychologist, my wife is a psychologist consequently we are friends with a lot of psychologists. I have a lot of respect for the field. Having had further training and experience in health psychology, I am used to working with people who have a healthy respect for those living with a chronic illness. But this was the 1^st time I had heard a psychologist talk about MY illness with such respect and understanding. I cried …no surprise to those close to me!

The term ‘slow erosion of the things people hold important’ really resonated with me.

Over the years my life, like the cliffs by the sea, has been eroded by this illness. I’ve taken a lot of time to come to terms with this. It’s not easy, I liked my life, it was good and had a lot of potential and a future.

Recently something happened that made me re-evaluate this situation… stop ignoring the erosion of my life. What I found scared me and angered me… Behind my back while I’ve been doing my very best to have a life Cluster headaches have robbed me of almost everything.

My education, my career, my body, my mental health, some of my friends, my financial security, my future hopes and dreams…

But in the last month it has threatened to take my last hope and dream from me…the dream I have held longest, from being a young girl… being a mum.

When I was 19 I sat in a Dr’s office in Central London and was told due to a diagnosis of polycystic ovarian syndrome it was going to be very hard for me to get pregnant.

I went back to my room in halls at university and I sobbed. A blow to my lifelong dream of being a mum. But in time, I think due to my strength of conviction I knew that I would be a mum, even with my sexuality as a barrier I just assumed that one day some how it would happen.

But then cluster headaches came along... And not just cluster headaches, chronic intractable cluster headaches. The weight gain from steroids, other medication and being stuck, inactive in the house created a significant barrier to our baby making plans. Worse was still to come…before I could even loose an ounce we discussed it with my doctor and due to a plethora of medication one of which is incompatible with pregnancy, my dreams were over.

I cannot get pregnant.

I will not give birth.

Did I mention I'm gay? Did I mention my wife is amazing ?

Shell has never wanted to give birth to a child. She never wanted to be a parent until she met me and after a few years and a few nieces and nephews we decided we would parent together. But the plan was always me... Friends and family find the idea of shell being pregnant almost as ridiculous as she does...

Yet she's offered to do this... For me... For us... I love her so much for it!

So now we are faced with fertility treatment, questionnaires, blood tests etc.... God I wish we could just have a lovely meal and slip into bed and make a baby!

As a couple we hadn’t given up on the dream, not for a single minute but we had taken our time until my cluster headaches were at a point that I felt that I would be the best parent I could be. This sadly meant that 10 years after our decision to have children, 13 years into our relationship we were already frustrated at the wait.

We have now been successfully referred to have treatment and all looks great so far… well not everything.

At the very last minute of the referral process while we were sat in the doctor’s office after all the scans and blood tests we were told that this process is going to cost £950 per cycle for treatment. We don’t have this money… not for one cycle let alone the 5 that we would have to pay for if they weren’t working…

We don’t have the money … because of cluster headaches

I don’t work … because of cluster headaches

Shell doesn’t work … she’s my carer… because of cluster headaches

We have not had more than one part time salary coming in for 6 years … because of cluster headaches

We have a lots of debt … because of all of the above… because of cluster headaches.

This time last year I was working and could have afforded it… now I’m not … because of cluster headaches

So right now, with all the tests complete and a green flag to try for our baby after waiting 10 years… We can’t start our family… because of cluster headaches

I acknowledge that it’s true that life’s good things can be eroded from our lives as cluster headache sufferers… I not only acknowledge it, I am living proof of it.

I am also living proof that it can’t take it all. In the last few weeks I have felt more love from my friends and family than ever before. They have always been this great, it’s just when you are thinking about the losses in your life that the amazingly brilliant things in your life shine like beacons.

I’m going to take that and remember that when life and cluster headaches try and take things from me, If it’s worth fighting for then fight I will!!!!

And our baby… our family is infinitely worth fighting for. And the person I am, the fights I’ve fought because of cluster headaches will help me make this happen and eventually make me an amazing parent.

Whats Worse?

From the outset I'm not wishing to cause controversy with this post I too have lost people well before the time was right. It’s just what came to my mind… which is what this is all about.

I read an article or two recently about someone in the public eye who was knowingly at the end of their days. In their mid 60's this was premature consequently painful for both them and their loved ones.

But I couldn't help thinking, what's worse? To lose your life at 65 having lived a full and happy life or live to be 100 having had so much of your daily life destroyed by pain and illness since your 20's.

I'm not saying for one minute that I would be better off dead than living the life I have for the last 10 years, but the thought of living to be 100 with this illness scares me to my core.

To be living the life my wife and I dream of now for the next 30 years, with careers and financial security as well as children and grandchildren of our own... I'd take that, even if it meant dying at 65.

It's the hand you are dealt, I know that. I can't swop or change it any more than I want or deserve the hand I got. But one thing I do know is that this individual bravely facing the end of her days has the attention of the media, raising awareness and money for cancer charities, she has the love, empathy and compassion of the nation... most people haven’t heard of the illness I have.

I'm not asking for the empathy of a nation... Just the people I meet... To understand the daily pain I've lived in for 10 years, the utter devastation it has caused in my life, the bargaining I do in my head with my god that I could have a something else instead... Something that can be cut out, fought with at least the chance of victory.

This lady facing her final days in the public eye was brave and courageous but sadly her time came even sooner that she had hoped for. I hope she is pain free now.

 Grab hold of every laugh, smile and tear you have ever had and hold on tight, because it's the memories we take with us.

There are days that I would have begged her to take me with her, but I'm hanging on here with my loved ones, waiting for a cure...

You never know... If I wait long enough.