My strength

My strength

People always say to me "I don't know how you do it!", "I couldn't do it I don't think I'd be strong enough".

I don't know how to answer them, I just do it. I just put one foot in front of the other and try not to fall down.

Two things happen this week made me reflect on my strength.

Firstly I met with the psychiatrist, I have long suffered with the impact of trying to be strong: depression and anxiety.

After talking to my life with him, how I work, how I feel, he praised me for my strength-me strong? I don't think so he reassured me that I am, given what I face many would have fallen apart.

He gave me Time to process this statement and I burst into tears.

What he didn't know was less than 48 hours before my appointment I had watch my grandma passed away.

I took great pride in telling him that I knew exactly the source of my resilience-the inspiration for my strength-my grandmother.

Age 27 she contracted polio. She was in hospital and rehabilitation for months. Leaving behind a one-year-old (my mother) and an infant.

Over the next 60 years, a miracle in itself, her body gradually failed her as a result of the polio and in the end she was confined to a powered chair and relied upon up to 20 carers a day to meet her needs.

But in that 60 years she should do well in the spirit that I have witnessed upfront for my 35 years. When I became ill she often gave me advice, support and more recently she prays my resilience and my spirit.

She was an avid reader of my blogs and not so long ago picked up the phone just to ring me and tell me she was proud of me, not something she would usually do.

I have the most love and respect for my grandma I have so much pride for 60 year long fight, but even more pride that this worrier was proud of me and my strength.

The strength I got from her.

I am strong-I can't confuse feeling weak with the fact that my life is hard.

I am strong- she made me that way

RIP Nanan Joy

my PIP journey

I am disabled, I claim benefits, I live on money given to me by the state. 

Words that make me feel awkward to say out loud. I don't know why

I have recently been through the process of having my 'needs' reassessed by the state. I want to share this process with you because its impact surprised me. 

I initially applied for help in 2007 when I was forced to leave my paid scholarship as a PhD student. This was an easy process which involved getting a paper application approved.

Earlier this year I was forced to admit that as a result of my worsening neurological issues and a recent diagnosis of Addison's disease, which is proving incredibly difficult to control, I am in need of far more care, support and consequently disability allowance/benefits.

When I rang up to request my case was reassessed I got predictable but unwelcome news that this would mean being assessed for personal income payments (PIP).   

The paper application was not dissimilar to disability living allowance (DLA) and evidence was not hard to collate given my abundance of hospital letters. My first major stumbling block... an assessment. I had never had a face-to-face assessment while on DLA and to be quite honest with increasing problems with anxiety, the whole process terrified me.

I managed to request and arrange for a home visit which made me feel a lot better knowing I would be in my own environment. Despite this the stress affected my Addisons which meant I had to 'stress dose' with my life saving steroids. 

The nurse was nice enough, but it was obvious from her questions that despite having 'researched' my conditions she had no idea what I was talking about ... But does anyone!? 

I must admit somewhat naïvely I didn't think that this process would negatively change the level of allowance that I was receiving as I was confident that it was wholly in line with my needs. I was just hoping and hoping that we would be able to increase my allowance giving us far more freedom and ability to cope with the day-to-day issues that are increasingly apparent. 

The day my letter arrived I sobbed for hours. My award had been slashed in half, in the coming days other areas of our income were reduced in line with the fact that I was not as disabled as I was last week! We had no idea how we were going to live on this reduced income. We would probably manage on a practically invisible budget but wouldn't be able to get to any of my medical appointments which are a 250mile round trip. 

After the dust settled and I calmed down, which took a while, I realised we had only one option, to fight. 

Fight... Again? Another one? I can't! 

I got advice, support and evidence and asked to see their full report to see what I was dealing with. 

I know my health is complicated, it's unique and special just like me (stop laughing!) but TRY! Try to understand that a TAC attack is not a seizure, and my seizures are not headaches! 

And apply some common sense! If I can't take hot food from an oven an alternative is not 'use a microwave'! 

The report gave me hope, due to its inaccuracies, but I still didn't want to...couldn't fight. I'm already fighting 9 health conditions, the medical system, fighting for understanding and fighting to get out of bed each day and make it through that day without hurting myself! 

Now this, another fight that makes me feel like I'm faking my illness, makes me feel guilty as it affects my family too. It's more paperwork, more phone calls and more days filled with anxiety. 

I ended up in a 6 month dialogue with DWP which resulted in a tribunal last week. 

The process destroyed my mental health. It was fragile to begin with but less than a year after my last counselling block ended I have now been referred to a psychiatrist. I can't cope with the anxiety and the suicidal thoughts. 

I touched on it before; I felt like everybody thought I was faking how ill I am. Family, friends, others with my conditions, the DWP, doctors. Anyone I told I 'heard' them say 'I knew she was exaggerating'.

I second guessed everything I did. On the rare opportunity I got to socialise or even on essential shopping trips I was scared to go, worried that it would reinforce what I 'knew' people were thinking. 

Last week I was awarded the level of benefits I was hoping for in court. Yes court. Being searched and having drinks and sharp objects removed (a plastic comb!!!) and having to wait outside the court room. The nerves got the best of my and after sobbing and asking for my mum (yes I'm 35! Yes I need my mum!) I arrived in court tear stained and shaking.  Not to mention it isn't good to leave someone with addisons without hydration! 

The panel were lovely by the way but I don't feel I should have ever found myself in their presence! 

Yes I'm happy and I was elated when I rang my parents. But it's not sunk in, I'm convinced it's going to go wrong still. I'm still anxiety filled and  already thinking about a reassessment in 2019! 

I was so far down the dark hole that it's hard to see the light... I can see the stars though, they shine bright no matter how far I fall. Life can get better based on this decision but it will take time, because this process was a huge setback. I need to learn how not to be scared again. 

Now this is just my experience, and in my experience of friends, family and social media this process varies from person to person, from city to city and condition to condition. WHICH IS UNFAIR AND WRONG

Don't be afraid to start the process... Be aware that it CAN BE a scary, traumatic, long and complicated process filled with unknowns... But it's worth it if you are able to afford the things that your health makes problematic/impossible. 

I claim benefits, I'm not a fraud, I am very disabled but I also have abilities and ways of improving my life and others lives. After my 1st assessor said I couldn't possibly have problems communicating face to face as I blog (yes I know, it confused me too! ) I stopped blogging. But I'm back, blogging and vlogging to make sure no one ever feels alone on this journey. 

All I want for christmas...

So here we are, it's Christmas Eve 2014. I have had a rough couple of weeks with regard to my CH and (more) complications so was feeling a little bit sorry for myself which always makes me a little bit thoughtful/emotional. Not helped by watching sad documentary's about the 2004 tsunami at 5am in floods of tears... but also crying at music, adverts and general day to day occurrences.


I know that there are worse things in the world than cluster headaches ... I cant think of many right now but I know that there are worse things out there. Its hard to get my head on straight sometimes to get everything in proportion, to see cluster headache as a part of my life not the whole, especially when they fight so hard for a dominant role.  But this Christmas I will be in the warm family home of my parents, surrounded by our family, with enough food, thoughtful gifts and love by the bucket load... And I will be sparing a thought for those who are not so lucky.


Before I get to the wish list for this festive period promised in the title of this blog, I wanted to say thank you. I wrote a blog post recently about my wife and I's journey to become parents caused a reaction we were not expecting. So many people offering, their love, their friendship, their support, their hard earned money and their prayers.


We were honestly so touched and overwhelmed and we go into 2015 with a sparkle of hope in our eyes that maybe this will be our year to grow our family.


So to my fairy godmother/genie ...


MY WISHES  *******

- For once, to wake us LESS tired than I went to bed - maybe with some sleep while I'm in bed?!?

- Pretty 02 cylinders - not the ugly things scattered around my house. I spent a lot of money on a beautiful bed and a gorgeous sofa only to accessorise them with black and white scratched up oxygen tanks with big plastic masks attached.

- A few guaranteed pain free hours a day, days a week or weeks a year. Just to be able to plan some precious time with my wife, family or even just time for me, to read a book for example. 

- More awareness of cluster headaches for me and my family ... My family support me, but the looks my poor wife gets when she says she is a full time carer because I have headaches if so unfair, after all she has sacrificed. I just want people to know what this really is.
- One tablet that does it all - with no side effects . I don't mind taking something, I don't mind taking it every day, but all the side effects that plague me can take a hike!

- A world with no triggers- even just for Christmas. Smelly candles, street food cooking smells, jingle bells, flashy Christmas lights... To name just a few of the little buggers that make life more complicated !
So there you have it ladies and gents... I don't ask for a lot. My list could be shorter, just one thing, a cure, but I know we are a long way from that... Maybe for next year, some of these wishes might even come true!
For this year, me, my wife, my family, my stimulator, my oxygen tank and I would like to wish you all a very merry Christmas, and to those who suffer any pain in their lives, I wish you a few hours pain free to enjoy yourself!

Merry Christmas xxxx

Incremental change not curative ideas

I don't think I went to the OUCH conference this year in London with any thoughts that someone was going to present to us a cure for cluster headaches...I'm not that naïve.

Alongside all of the lifestyle changes asked of me by my neurologist, I have explored every pharmaceutical option I have ever heard of for cluster headaches, not only tablets but injections, nasal sprays, nerve blocks and infusions.

I have had surgery too but every little change we make, drug we add, dose we increase, injection in the face... they all get me a little bit closer to a pain free few hours a day... not a cure.

Professor Goadsby, the leading CH doctor, talked in some detail about the medications that are available and are in various stages of development. He stated that current medications are all very poor. I am inclined to agree with him 100%. But as  chronic intractable patient, meaning my particular brand of cluster headaches doesn't respond to existing treatment, of course I agree.

From my understanding though, none of these drugs were developed for cluster headaches... we stole them from migraine, mental health, cardio vascular medicine and epilepsy to name just a few. On a recent trip to hospital my medication list led a Dr to assume I had epilepsy, diabetes, Parkinson's, heart disease, bi polar disorder... I have none of them!

I don't expect to find something that eradicates CH from my life. I don't expect to ever have a pain free life... I want a cure and I want a pain free life but I am old enough and wise enough to know that its not going to be a possibility in my lifetime.
Ill stick with it, ill keep trying new things, adjusting the doses, enjoying the pain free moments it affords me.

Where I struggle most of the time is the unwanted side effects. Medication was once described to me as a beneficial poison. Ill credit my dad with these words of wisdom but I'm pretty sure he stole it!!

What I was probably most excited to hear at the recent conference is that there are medications in the development stages that will take away some of the side effects of the medication I am currently on. Rather they do the same thing as my current meds but without the complications.

I worry what the long term effects of my meds combo might be. No one knows when I ask them, it's an odd combination and I was fairly young when I started out on the journey with them. To know that some of these side effects may be eradicated is really good news... Maybe I'll be able to get my heart rate higher than 60!

Baby steps... Less pain, fewer side effects, brighter future.

...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.

Not the only one...

A few months ago I had never (knowingly) met another person with cluster headaches. In over a decade of suffering I had never met another person who could say 'I know how that feels'.

A month ago I rectified this situation when I met a fellow sufferer and more importantly someone who has become my supporter and my friend. A wonderful woman I met through internet support groups where we bonded over our shared experiences and outlook on life.

Just this one human being who had felt my pain made me feel like I wasn't the only person in the world who lived this life, a half life of pain, medication and loss.

But that experiennce was surpassed this weekend when I sat, alongside my wife, this new friend of mine and her fiancé in a room with more than 150 fellow sufferers and their supporters.  Accompanying us on this momentous day were a dozen Heath related professionals who  are dedicating a large part of their careers to improving the physical and psychological well being of CH patients.

Photo credit to Professor Peter Goadsby - from twitter

This is the first of four posts I am writing about this amazing day hosted by OUCH UK (https://ouchuk.org); There is too much to say in just one post and to be honest I need time to process all the information we were given!!!

One of the expert speakers on the day highlighted the prevalence of the group of illnesses including Cluster headache known as trigeminal autonomic cephalalgias.

0.2% of the population suffer from this, our unique version of hell. Therefore this gathering of more than 150 of us whose lives are directly affected by CH is so amazing and as  sufferer strangely comforting.

There were one or two moments of quiet at the conference where I looked around the room at all of the people there, I had heard some people talk about decades of suffering, others just months, some suffer daily and others have periods of relief between the pain.

I have often thought about the differences between me and other sufferers. If I'm totally honest I, mainly on my bad days, i have had thought like 'but you have only been at this for a few months, I've been doing it for years!' and 'at least you get a break!'. I feel bad about these feelings I really do, but i think all CH sufferers will understand

But in that room full of understanding, compassion and camaraderie all I could see was the similarities between us... the pain, the frustrations, the medications and treatments, the deep holes left in our lives.    

This event felt like a once in a lifetime experience, to have so many of us in one room at once, however i got the sense from those who attended, including medical professionals and the representatives from OUCH UK, that this will be happening again!!!