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!!! 

we are all unique

We are all so different, there are 7 billion people on this planet and I don’t think there is another one out there like me. Not exactly like me any way.

We find friendships with those who are like us in some ways, our shared interests or experiences.

I have found support recently in a group for cluster headache sufferers. I have been given some invaluable advice, some genuine compassion and made some true friends.

But in recent weeks I have felt like I don’t belong, like I’m too different from the members of the cluster headache group.

This is mainly because of my recent diagnosis of Addison’s disease which has been slightly all consuming, dominating my day to day health. But also because I find myself frustrated, not just with cluster headaches but with life itself. I don’t feel like I fit into any box, like I am like anyone else in any way.

I have labels that make me ‘the same’ as other people… that’s helps sometimes… being able to relate to someone who knows what it feels like.

But you can’t just be that one label in isolation; I’m not just a cluster headache suffer. There are so many other labels that define me and make me who I am and that effects my experience of being a cluster headache patient.

My frustration at the moment is that some people assume that when you wear a label, you must fit into that box wholly and completely. We are not all the same, we don’t all experience things in the same way.

I bet a few women out there would agree that one pregnant woman is not the same as another pregnant woman for example.

It’s hard for me as I compare myself to others, they have cluster headaches the same as me, but they manage to work, have kids, stay at university. I get myself really upset, but then I remember…

 They don’t have cluster headache’s like me, no one experiences cluster headaches like me, we all experience them differently.

I knew this obviously; I even studied labelling theory at university once or three times! But I think it’s really important to remember two things

• Just because we wear the same labels, whatever that label is, it does not mean we are the same, or our experiences are the same… we are as unique as the stars
• Don’t compare yourselves to others based on who or what you are, you may have the same label but the rest of you affects how your wear this label.

I may feel defined by the host of medical labels attached to me at the moment… but its nice to remember I am unique.

 

 

 

RIP Robin Williams

I had the worst night in six months last night, that lovely combination of migraine and cluster headaches. At 6 AM my wife asked me if I was okay, my gut reaction, 'no I wish I was dead'... And I meant it. As the fog started of pain and nausea started to lift, I reached for my phone as I always do to read the news and events of the night, in an attempt to reconnect with the world.

This mornings headline... 'RIP Robin Williams'

One of the worlds greatest and funniest men had taken his life while the pain was ravishing my life last night.

All of a sudden I was so grateful to be alive.

As a cluster headache sufferer, I have stood on the edge of life a number of times. The edge between Life and death, hope and despair, where our pain seems so all encompassing that future seems impossible.

A future is possible, but it's a long, hard, and sometimes lonely journey. It's not always the future we hoped or planned for, but it is our very own unique part of the universe in if we're not there to shine the light just fades. We can make our unique part of the universe beautiful we just have to keep on fighting.

RIP Robin Williams, you fought a good fight and your art and humour will keep me going in the darkest of times that I know I have ahead of me. Your light will not fade for a long time you kind and gentle man

Listen to your body.

The best advice I was ever given was to listen to my body. I know when things are going well because I feel relaxed and in control of my health, be it good or bad at the time, I know what my body needs.

I know when I need to eat, drink, rest, sleep, take medication.

But sometimes, things get out of synch and I don't know what language my body is talking let alone how to fix/help it.

I had a pretty good rhythm and routine worked out with my cluster headaches but in the last few months I have been blindsided by Addison's disease.

I don't understand the many issues that this illness will present and create in my life yet but I know that just like with cluster headaches we will create a nice little routine and relationship to stay as well as possible. (I hope so anyway! I'm doing my best to understand all I can and need to do to stay well!)

However as I've said in a previous post, I have a nice give and take relationship with my body. One that I quite often vocalise, I'm often heard talking to my cluster headaches negotiating with them or reminding them we had a deal "I'll rest and relax today if you give me 2 hours off this evening!" I'm not saying it works but there is certainly some value in it, even if I just feel like I've got an element of control.

But now what's happened to this conversation? this dialogue that was going so well between me and my body that was going so well?  It's halted, broken. Not only do I not understand what my body wants or needs as it's talking a foreign language I also don't trust it.

We had a deal, I was keeping up my end of the bargain, eating, sleeping and drinking as required, taking all the meds and treatments I was told to and making huge life changes like giving up work. But apparently that wasn't enough and my body chose to let Addison's in... To let it take over and cause me new problems and issues.

Well that's the way I look at it when I'm feeling angry, sad, scared and sick. There is another perspective...

I listen to my body because it's usually, ok not usually... It's always right. And it is yet to fail me.... When I have been fighting hard, spending days in theatre or nights on cardiac care wards... No matter how hard I have been fighting, my body has been fighting harder.

 I have fought hard every day to get out of bed... But I've woken up everyday!

 I've got into bed every day exhausted and in pain... But I made it through another day.

All thanks to my body

I listen to my body ... Because it's never let me down.

Facing forward

It's hard not to get caught up in the ifs buts and maybes of what was and what could have been. To think about the things that are lost/changed. My career which now live's on a shelf, my body which is now the subject of a year long fitness campaign, my ability to have children which has been stolen from me.

I have little understanding of why this illness happened to me. I have however come to accept it is here to stay, which is a huge part of the battle. I'm not saying I'm not angry... I'm angry as all hell, but I don't let that blind me to the realities of my prognosis.

So looking forward I see a life with this illness, for me and for my family. I'm doing ok with this. I mainly get angry and upset when I look back. I can't ignore the 24 years of life I had before my life changed forever but if I think about them too much... Well it can be really painful and I have enough pain in my life.

Any time that shell or I get truly depressed about our situation is when we start thinking about what could have been... Where we could have been living, what we could have been doing, how many kids would be running about, how much money would be in the bank account!

Most of this stuff we have come to understand as unimportant. We value the really important but smaller things in life now. But something's like financial security (not being rich just not crying over money each month) and being able to start a family are tough things to deal with.

Right now my focus in all about facing forward. Focussing on getting as well as I can be, in body and mind. Making sure our future is as financially stable as possible, and starting a family.

I can't keep looking back, I can't compare my life with an imaginary life that may have one day happened. This is the life I have now and it is beautiful and spectacular in it's own understated way!

Are you better now?

Are you better now?

This is every chronically ill patients worst nightmare question.

Please don't expect me to get better... You will only be bitterly disappointed... I know I am.

There are many ways to answer this question. The most polite versions don't come to mind as quickly as the rude, curt and short ones.

For me my mind often wanders to 'well I feel better than 10 minutes ago when I was banging my head against the wall because it felt like someone was using a drill to operate on my head'

I will have ups and downs- hopefully more ups than downs!

I can even hope for periods of remission but I will never be better.

I will tell you where my problems starts with this question.. .A lot of the time that people think I'm 'better' or 'ok' I am suffering silently. People only know there's a problem when I'm really struggling to cope.

Daily I have a plethora of symptoms that would stop most people in their tracks... They stopped me in my tracks for the first few years but you learn to cope, you have to. If you didn't it would stop you from having any life at all.

So when you ask if I'm better, I'm not. But I might be feeling better, still silently coping with exhaustion, tremors, a background pain that won't go away.

I appreciate that this puts you in an awkward position... You are asking out of genuine concern for my well being but I'm sure you can understand my frustration at being asked if I'm better when that is the one thing i will never be.

Living in a box

I'm living in a box.  I'm trapped here, it's not my choice. There is a door but most of the time it's locked. I don't have the key, no one does. There are doctors and scientists looking for it but until they find it I'm trapped.  I can see out of the box, it's all glass, the whole world is out there to be seen in glorious technicolor. But sometimes I can choose to hide the world going by by pressing a button. Sometimes it just hurts too much to see what I can't be part of. Would you want to see that?

The biggest problem is that no one can see the box. They see me but not the box. They want me to do things outside of the box, simple things like walk to the bathroom and take a shower or something big like go out for dinner. They don't understand that I can't get out. They think I don't want to get out... Can't they see me banging the glass screaming and crying because I'm desperate to get out.

Worse still the box sometimes hides me altogether, makes me invisible to every one. It's like the world forgets about me, like I never existed.

But I have my ways of beating the box. I have so much time on my hands stuck in the box that I've remembered how to appreciate the important things in life.

First trick- my wife can get in and out of the box. She can help me when I'm stuck, entertain me and comfort me. She can leave but she can't get me out. She can bring me food and clothes but I can't get out to do these things for myself. Not everyone has someone who can get in and love them.

 I've taken time to actually listen to music, not just chuck on a playlist to listen to for 20minutes on the way to work. I actually listen to the lyrics, explore whole albums rather than just the tracks I like. I used to do this as a teenager, then life took over, work and studies and family.... I know that's the inevitable life of an adult but that has been taken from me so I'm going to make the most of this chance to be 'young' again.

We've started cooking and dieting... I know not a usual combination. We have made some spectacular food, and by we I mean I do what I can when I can... I'm a good head chef bossing and directing! We have read the 101 cook books that were previously decorations in our kitchen. Our latest thing is a worldwide food challenge, learning more about cuisines from around the world.  Oh and I'm 3&1/2 stone lighter than I was! Not bad...take that box!

I take time to talk to and see friends when the box opens the door. But I'll let you into a secret... I've got wifi in my box and thanks to FaceTime and skype people can get in the box with me and give me a virtual hug! Never take your friends for granted... And by that I mean your real friends. The ones who for some reason are not controlled by the box. They never forget that you exist, always understand that you want to be out of the box when you can't get out and wait patiently for the door to open.

Nature is beautiful.... Don't forget that. Yes an I pad is pretty spectacular, I phones are bloody marvellous and can do everything, the latest series of the latest good thing is amazing too... But stop and look up. Look at the rain on a window pane, look at the sun setting on your way home. Look at how beautiful the people around you are. Actually look at them. Isn't it amazing how beautifully unique we all are. It's the small things... I take more photos now too. Photos are memories. Memories are priceless. Memories are actually all we have in the end, it's all people have of us when we are gone... Make good ones.

I'm trying so hard to escape the box, I'm making the best of my time while I'm trapped in the box and on the days the door opens... I get out and I live. I'm making memories...

#makememories #fighting #winning

getting a seat...

I don't like being disabled. I want to hide it from the world and I compensate and adjust to make my illness as invisible as possible.  I want to be ‘normal’ just like everybody else. I’m not too sure who I am kidding!

Then there are those other times when you wish you had a big sign on your head that said 'I'm disabled’.  Mainly when life is so hard that you need something or someone to help you out.

My best example of this is public transport. I don't drive so I am often found on public transport all over the UK. I am a very competent and confident traveller but one thing causes me problems. The ‘priority seating’... Or lack of it!

Most regularly, at the moment, I travel on the Nottingham tram network (NET). There are 6 priority seats on this service and two 'bays' for wheelchair users. They even identify the best door to use on their platforms with a logo of a wheelchair.  Probably the best disabled access local transport service I have used.

My journey is 25 minutes long and I usually can't stand on a 'wobbly' tram for that long. So I sit in the priority seats. I feel that I am justified in doing so. I am pretty sure that not everybody who chooses to sit there is as justified though. This is fine on a quiet journey, but on a busy service where there are no other seats available for those less able to stand this can be an issue.

I have seen some disgusting examples of rudeness. I often see ladies with prams turn the other way to avoid eye contact with wheelchair users joining the tram so that they don’t have to move to make way for the wheelchair.

I have been on the receiving end of people who have made assumptions about me. Sadly, older people don’t come out of my next two examples well… this is not my view on all old people.

I was sat on the ‘please give up these seats for those less able to stand’ seats at the front of a bus… when a number of ‘old ladies’ got on. Each and every one of them tutted as they walked past me. They then continued to talk (loudly) about me, questioning why was I sitting in a seat for the elderly (it’s not just for the elderly), for the entire journey and how important these seats are to them. Can I just say that if any of these ladies was clearly struggling to walk further than the seats I was on I would have moved. They were all however carrying more shopping bags that I could have managed.  As I stood up and they saw for certain I was ‘not disabled’ their commentary carried on, so I turned and politely asked them to consider that not all physical disabilities can be seen.  They were quiet. I left.  I hope they thought about what I said and treated others with more respect.

On another occasion a lady sat behind me and again tutted at my presence on the ‘please give up these seats for those less able to stand’ seats. I can’t remember why but I was in a bad mood on this occasion, so I took my disabled pass out of my pocket and showed it to her, letting her know I was entitled to sit here her assuming that this would be enough for her to leave me be. Instead, she looked me up and down and said ‘I didn’t realise being fat was a disability now’. I was devastated. I don’t hide the fact that 8 years of treatment, being housebound and being miserable has made me put on a lot of weight (that I am currently in the process of losing! 21kg (46lb) lost in 14 weeks… round of applause for Katie please!). As you can imagine, this incident not only ruined my day but it added to already escalating self-esteem and depression problems.

But here lies my dilemma... our illnesses are hidden by their very nature and where there are more visible issues If I try to hide them I'm sure others do too. When I feel that I need a seat and want to utilise one of the priority seats, how do I politely ask people for a priority seat if I don't know if they need the seat too?!?!

I'm quite a shy person, but I know that if someone asked me for my priority seat I would go one of two ways. Bite their head off saying please don't assume I'm not disabled because you don't see it... Or I would get up and stand at the detriment of my own health for the rest of my journey to avoid embarrassment.

I often need a seat on a busy train, bus or tram, but I am yet to ask anyone to let me sit down. I don’t know if I ever will. My disability is on the whole hidden, but so are many other peoples. I don’t want to insult anyone.

If you are reading this and you are not disabled, please, where you can, think about who might need the seats that are allocated for those less able to stand and be willing to give it up when asked.

What are Cluster Headaches?

How many people can say they know the answer to this? I have had such negative experiences in my illness journey because people don’t know what cluster headaches are.  I don’t expect people to know every illness and ours in a rare one with only 1 in 1000 people suffering from Cluster headaches and only 10% of those suffer chronically like I do.  What I don’t like is when people guess what cluster headaches are.  People hear the word headache and make the rest up!

This isn’t just strangers, its friends and family; colleagues and employers; but scariest of all its medical professionals.

Again, medical professionals can’t be expected to have an in depth knowledge of all illnesses and treatments but they should know what questions to ask, more importantly they should have empathy and respect.

Don’t get me wrong; a lot do! I have had two amazing GPs practices in the last few years that have always supported me in my fight. I wrote a post recently about a trip to A&E where they were unaware of Cluster headaches but asked me the right questions to help them understand it.

But this week I had a negative experience which has spurred me into action. I was asked to give a 111 nurse (for those of you outside of the UK, this is the non emergency phone line you call for advice when 999 (911) is not appropriate) my relevant medical history. I said ‘I have chronic cluster headaches’ to which she responded ‘well not that’ … I immediately snapped back ‘Yes THAT, that’s my main illness’.  Rather than ask me about the condition she clearly knew nothing about she asked me if I had taken any paracetamol for my headache today!!!?

For those of you who are not aware of cluster headache and its treatment, paracetamol does not work! In fact It can make the situation worse, as can all pain killers.

Worst Pain condition known to man and no pain killers….so how does that work?!?

There are two main ways to treat cluster headaches: preventatives, which are normally medications that are taken daily and abortive’s which are treatments we use when an attack comes on.  I have taken more than 20 different preventative’s in the last eight years with varying success.  I currently take 3 preventatives used to treat illnesses I do not have but somehow they seem to work, these include verapamil (a heart medication primarily); pregabalin (an anti-epileptic); and lithium (a drug primarily used in mental health).  The side effects have been many and scary at times, but on the balance of things they were always worth the risk.  I am a bit 'zombified' and I subsequently have issues with my heart and my balance.  My limbs are numb and movement isn’t always easy, but I’ve developed coping strategies which help make things manageable but by no means straightforward.

Abortive treatments are not as abundant as preventatives.  For me, initially I  relied on a combination of injections of a drug called sumitriptan and Oxygen therapy.   I can no longer take the injections due to side effects but I have home oxygen.  Oxygen is taken at 15 litres a minute through a specialised mask.  I’m not sure how the oxygen works but it does, most of the time.

Interesting fact: The first person who wrote about cluster headaches and the success of oxygen treatment was Dr Kudrow, the father of Lisa Kudrow, better known as Phoebe from friends.

There are also other treatments that include ‘nerve blocks’ (injections into the nerves in the face, head and neck, that use steroids and local anaesthetic to block the nerves); ‘stimulators’ (wires that are implanted into the nerves and an electrical pulse is controlled by a stimulator implanted into your body.) I have tried both of these with successful results. I wrote recently about my serial multiple cranial nerve blocks and I’m sure I will find time to blog about my stimulator surgery soon.

So that’s how we treat it, with varying degrees of success. But what are we treating. What is a cluster headache? I can only describe my own experience’s so always ask others what their journey has been like.

Cluster headaches can be chronic where you have them daily with no respite, or episodically where you experience them for example for 6 weeks a year and then are symptom free for the rest of the year.

The pain of an attack is indescribable. It’s based around one eye and is excruciating. For me this is accompanied by a droopy eye lid, and one side of my face gets so red and hot that you could cook an egg on it.  Also accompanied by a runny nose and a runny eye; an Inability to speak; significant weakness and loss of feeling and movement in my whole left hand side.  In addition to all these physical symptoms I become terrified and irrational.  Those of you who have given birth and got to that ‘I can’t do it’, ‘it’s never going to end’ stage, well that’s the state I am in when 'attacking'.  I have bashed my head against walls, bedframes, bus stops, anything hard … I have broken the skin scratching my arm and face… I have broken my foot trying to walk before the feeling came back in my leg…I have also considered suicide.   

Did I mention cluster headaches are also known as suicide headaches.

My attacks last anywhere from 45 mins - 3 hours, but I often experience and see others report differing lengths of time.

At my worst, for just over a year I was having 20 hours of attacks each day, everyday.

Now do you think it’s a headache?

There is nowhere near enough research into cluster headaches we need so much more.

These are the things we don’t know:

• What causes cluster headaches? There are theories but no definitive cause;
• Why some of the treatments work;  I’ve often said how does that work and been given the answer ‘we don’t know why but it does’!
• What the optimum treatments are, whether this is pharmaceutical, medical or surgical we want the best outcomes.
• Why some people respond to some treatments when others do not; we are all different, but are our conditions the same?
• How to cure cluster headaches, until then I am stuck with this illness for the rest of my life…

What I do know about cluster headaches:

• They are considered the worst pain known to man;
• They SHOULD NOT be called headaches… They are not a headache.
• The complex nature of how they affect me never ceases to amaze me after 8 years of suffering;
• The worst part of this illness is other people’s reactions; yes this can be worse than the pain. The pain and I have learnt to live with each other. When people react negatively to my pain and suffering it hurts me more.  Don’t belittle what I go through…. It takes a true warrior to survive this.

So now you know a little more about cluster headaches…. I need to ask you a favour… please share this with at least one person, ideally someone in a medical profession! If you have cluster headaches the more people know about this illness the less we have to walk around justifying our experience so please share too.

What Disney Pixar didnt tell you!

Have you seen the Disney Pixar film 'Up'? I love it, it's such a beautifully animated film with a touching and heart warming story.

The iconic image of the film is the home of a couple who have had a long and  happy marriage floating away into a blue sky by hundreds of brightly coloured balloons.

This image is in my mind a lot at the moment. Not because of the film per se, more because of the meaning I have associated with that flying house with it's colourful balloons.

To me that house is my life; a happy (mostly) life that I share with my family. The balloons are beautiful, they mean my house; my life can fly! The balloons represent financial security, friendships, good health, employment, fertility, emotional well being. All the things most people take forgranted that make our lives spectacular and beautiful. 

What I know now...

Now here is the but Disney didn't tell you! Is that the balloons can burst and when all the balloons burst, when you feel that everything that makes your life so beautiful and colourful has gone, you are left with nothing but you. You don't always stand alone, sometimes you have  and things left who are close enough that they are in the beautiful little old house with you.

All that colour may have gone and your life may no longer float along in a clear blue sky but you are still here. The house is still standing. For me, who finds myself there now... With the last balloons all burst... When I open the front door to that little house, I find that it's still colourful and filled with light and life... Just not in such an obvious way.

I have lost so so so much to cluster headaches. More than I could recall or articulate. Cluster headache has gone around with a big pin and burst all my pretty balloons. But not everything. It didn't burn my house down! I genuinely have not lost anything to cluster headaches that can't be replaced. There are many things that have been lost that leave me heartbroken and grieving... And probably always will.

But I have what I need! I have who I need!  I have reached rock bottom... But honestly this feels better. The last balloon to go was controlled by us, so it was a smooth landing not a crash landing! The crash landing that we have had daily anxiety about for years! The house is firmly on the ground... We can breathe for a while and work out how to rebuild all the damaged part of our life.


So if you will excuse me I have some balloons to blow up! I'm taking this broken life to the clear blue skies again. Just you watch me!

I dont want to sleep...

In the last eight years I have had nothing but pain and exhaustion. If you have seen me out and about smiling, I was either smiling through the pain or smiling through the agony of exhaustion and fatigue. There is a third option that I was taking a super little pill called prednisolone which gives me pain relief and an artificial sense of energy that I run around burning off until I was even more exhausted that before!   However after eight years this pain and exhaustion had sadly  become the norm.  I didn’t realise I’d been walking this balancing act for years until something changed and I got both pain relief and energy at once.

In the space of a couple of weeks my Neurologist managed to put two of my headache disorders into remission and I was diagnosed with Addison’s disease which sounds bad ( and is quite bad) but the treatment I was given made me feel better than I had in ages.

My very painful Cluster headaches are isolated (mostly) to the night time hours. So in the absence of my other two headache disorders I had some pain free time during the day. Add to this some genuine energy too. Wow, both… at the same time… what a unique feeling!

I got into a really set routine, the attacks started at 9:30pm and I ventured off to bed at midnight for a few hours of pain and 02 till the attacks subsided at around 5 am.  We estimate about 30-90 minutes sleep a night intertwined with my attacks. But at 5 am when they stopped I bounced out of bed and I didn’t stop until it was pain time again!

For a month I did this… I survived on very little sleep but I was having lots of fun and being a productive member of my household.

Everyone told me to slow down a bit, I didn’t need to go from 0 -100mph at once. But why would I rest…. Seriously I can be normal for a few hours a day, why would I choose to rest!?!?

I knew it wasn’t healthy, I knew on some level I was getting exhausted but there was no way I was going to give up my new found freedom to sleep.

When my lovely wife got sick with a bad virus I ran around all week taking care of her. I was so proud of myself. I was finally getting to look after her and do it well.

However it was on my birthday that I realised that this was all about to backfire on me. As we spent a lovely family day walking around Trentham Gardens (look it up my UK friends, its lovely) in the sunshine I was freezing! Within 24 hours I had full blown flu. I NEVER get the flu, it turned into a chest infection and inevitably the cluster headaches decided that they were going to play havoc with my daytime and my night-time.

I hadn’t really recovered from this 3 weeks of viruses when I was admitted to hospital with what now looks like an extension of the cluster headache, but at the time was unexplained loss of sensation. But it scared me… not much scares me anymore, I can’t afford to waste time and energy worrying about my health. It takes up enough of my time living with it let alone worrying about it too.

I wondered briefly about why my cluster headaches had introduced something new to the challenge right now; but sat in a hospital bed all night on your own you have a lot of time to think, and the answer seems obvious…to me at least.

I had been really ill with my cluster headaches for 6 months, worse than normal. I’d had very little sleep in that time too and was fighting a huge battle every day with the number of attack’s I was living with (up to 20 clusters a day with Paroxysmal hemicrania and hemicrania continua on the attack too). Then I had the life changing month of serial multiple cranial nerve blocks and Addison’s diagnosis and my life changed for the better… but I never allowed myself to recover from the months of cluster headache assault on my body before I tried to live life at 100 miles an hour.

 I’m exhausted, physically exhausted.

But how do I take control now that I’m settling into my new normal, whatever cluster headaches has in store for me now.

I was adamant that the reason I wasn’t sleeping was physical, because I had too much energy and couldn’t sit still… but on reflection I was kidding myself. I didn’t want to sleep, I wanted to live…. I wanted to be alive while I can.

Imagine being given this new access to a life without pain or exhaustion and deciding to take an hour to sleep!

But I have to… I know that now… I just don’t know if I can.

We, as a group of chronic sufferers talk a lot about this balance. Making the most of your ‘well time’ but not making things worse for you by overdoing it.

It’s a case of accepting the chronic diagnosis as something that will be part of your life EVERY day regardless of the number of attacks you experience . Even when you feel well you have to remember that you are ill.

That’s the hard bit… In that 4 weeks I had conversations that were not about cluster headaches. Even shell and I didn’t talk about it for weeks at a time. I was living a life that didn’t revolve around it. It was genuinely bliss.

Now… well now it’s the centre of my world again as I try and get stronger. This is much more of a psychological battle than a physical one. There is a lot of work to do with both, but unless I try and rest and relax I won’t get strong enough to face what cluster headache has in store for me.

My life with cluster headaches is not what I want. It never will be what I want for my life, but I need to take some time to re-evaluate what makes me happy, what I want and what I need. I need to work out how to get it too, how to get what makes me happy in a life that includes Cluster headaches.

So for now its fun and excitement in moderation and rest and relaxation on prescription.

Why don’t the NHS do holiday’s to Tuscany on prescription… I bet I could relax and rest there!

A good emergency experience... they do happen!!!

There is apparently very little about my health that is normal compared to the average person, But hey I never claimed to be normal!

On Monday I was admitted to hospital with new and unexplained numbness in my right arm, leg and face.

I went through my local A&E so obviously I saw a number of health professionals from the receptionist, the nurse who triaged me, the nurses to ran my tests and fitted my cannula and the A&E nurse practitioner who spent over an hour taking a thorough history and doing all the examinations to get to the bottom of my symptoms.

Each of these individuals endeavoured to understand as much about chronic cluster headaches and more specifically MY experience of MY cluster headaches.

I can’t praise them enough, both the A&E staff and the ward staff were amazing. These are some of my favourite examples of their high standards of care.

“You truly are an expert patient… thankyou” (the nurse practitioner in A&E)

I know now what my ‘normal’ pulse, BP, temperature etc. are. They are not ‘normal’ but to me at least I can identify what is abnormal for me. I know how to describe the ‘normal abnormalities’ on my ECG and I know what my lithium levels normally are.

I take an interest, I ask the right questions of the health professionals around me, I remember what I can and I write a lot of stuff down. I take pride in understanding my body and my illness. This helps when I see that look of panic on a nurses face when they see a pulse rate of 41 when taking my obs, I can quickly explain that while that is quite concerning it’s also very normal for me.

“So you have had chronic cluster headaches for the last eight years with very little respite… that must have been hell. You are doing well to still be smiling” (on call neurologist who examined me)

I never ever find this patronising. I love it when people say things like this, especially medically trained people. It validates my experience. Yes it has been hell, from the bottom of my heart, THANK YOU for acknowledging it.

“And you take lithium for…?” (everyone who took my medical history!)

If you looked at my medication list with no knowledge of my diagnoses you would forgiven for assuming I was diagnosed with diabetes, bi polar disorder, heart disease,  Parkinson’s, epilepsy and possibly others. I have none of these. But it can take some explaining! I carry a list of my medications listed under my diagnoses. I would recommend this to any cluster headache sufferer!

“I’m going to talk to a neurologist as to be honest I’ve never heard of any of your neurological conditions” (A&E nurse practitioner)

THANK YOU! HONESTY! Don’t pretend to understand when you don’t. If you don’t know, ask me, ask an expert but don’t make it up as you go along. I have the greatest respect for doctors who are willing to say ‘I don’t know’. Even my consultant who is an expert in Cluster headaches and and expert in my experience of Cluster headaches occasionally says  ‘I don’t know’…. Ok he says it quite a lot but I am quite confusing!

I think myself very lucky for this hospital visit.

I count my GP and Consultant blessing everyday!

I am the expert in my own experience of Cluster headaches. All I want is for the medical professionals that I meet to take their medical training and apply it to my case… I don’t and probably wont ever fit into a box.

I am a complex patient … but we all are … We are all human beings…that makes it complex.

 

“Thank you! Gracias! Merci! Danke schoen! Spasibo! Mahalo!”

This week is ‘National Carer’s Week 2014’… what a perfect excuse to say Thank you to those who take care of us.

They are amazing human beings.  I have Cluster headaches and other health conditions but those around me are living with it too. I am never going to get used to the idea that I need a carer. I don’t want one. I want to be free and independent. I want to have a wife not a carer but she is both to me and I’m glad she has willingly taken both jobs!

This is an unusual post for me, but I think its an important one. If you have someone in your life who cares for you maybe find 5 minutes this week to thank them for what they do for you.

 

 

But the word Thank you doesn’t cut it really… there is so much that is done, said, sacrificed and achieved as a carer. More than I really appreciate, more than our friends and family appreciate and more than even my carers can see.  The tasks undertaken by our carers are more than other people see… so much more that we want then to have to do, but without them our lives and our families would fall apart.

I don’t just want to say the words Thank you… they seem empty after saying them for so long. A card seems too boring/mainstream… so I’ve had my thinking hat on and I’m going to try and say thank you differently.

So today marks day one of my week of creative and inspired ways of saying thank you to the woman who has been my rock. Others have been a constant source of love and support she has carried me.

I can’t say (in this post anyway) what I have in store… but I hope it will go a little way to making her realize how much I appreciate her and her sacrifices.

First, I do want to publically say thanks for all she has done! She might not be keen on this public declaration of my thanks, but without it, how will people know all that she has done with and for me.

Dear Shell, my wife, my best friend and my carer.

I need to Thank you… there are so many things you have done for me, sacrificed for me and supported me through, I hope the week ahead goes some way to me showing you how much I appreciate you and everything you are and do.

Time … There have been days and weeks and months where I have spent every day in attack after attack after attack… yet every time I open my eyes there you are. You must have been bored to tears but you never left my side. Thank you Shell.

Emotional punchbag …when life gets too hard for me, I take it out on you. You are my emotional punchbag. I have said things to you that I regret, I have said things that hurt you and I am sorry. I thank you for not walking away, for not turning your back, when many other people would have done.

Love… We fell in love when I was 20.  I was a  youthful, adventurous, determined and loving ‘girl’. I was a little older and wiser when I was diagnosed 6 years later, but the woman who stands before you now is a million miles from that person. I’m Physically so different, I’m riddled with side effects, weight gain and exhaustion. I’m mentally broken, I see the world differently, I see me differently. Bottom line, I’m different. You still love me. You still look at me the same way you did 14 years ago. Your love is better than any drug that the NHS has ever found for me. I love you too. Thank you for loving me Shell. I love you for still seeing the girl you fell in love with … you make be believe she is still in here somewhere!

Sacrifice’s…I can’t list let alone count all the sacrifice’s you have made for me. You have missed out on so much. Your career, your education, your own health. I know It doesn’t ever make up for what you have lost, and you miss the things missing in your life. You have not been doing nothing, you have not achieved nothing with your life. You saved my life, on more than one occasion. I would not be here without you.

Tablet duty… you have sat and sorted my tablets for hours on end making sure I have a constant supply and more importantly that I take them even when I have rebelled against them. The course of my illness could have been different without this care and diligence.

Acceptance… You, from day one believed how bad this illness was. You have never dismissed any sign, symptom or mood. You take it seriously when it is serious; you calm me when I’m over thinking or over emotionalizing it. You have let me go on my own very personal journey, but you have been there at every step accepting and living this illness with me.  Your patience and understanding have been pillars of strength to me.

Still being here despite it all… I have told you to leave; I’ve asked you and begged you to leave me, probably 100 times. You could have had a very different life, you could have had all you dreamed of… but you chose to stay in this life with me and my illness… I’m so glad you stayed, if im honest I never wanted you to go, I just wanted you to be happy. I am trapped by this illness, you are not. You stayed out of love… I love you xxxxxxxx

We have created a home, a relationship and a life that is growing and changing and is filled with love, patience, acceptance and giving. Our future is so exciting Shell.

Love always

Me xxx

This week there is also one other special person who has been my full and part time carer at different times over the last 8 years but she has been my mum for 34 years!

My mum must have clocked up 10’s of 1000’s of miles driving me everywhere I have needed to be! Her poor car… her poor petrol bill … her time… her patience. She has also been an emotional rock for me and for shell. You always know what to say, to make us feel better or gain a little perspective.  The multiple sacrifices that you have made, financial, practical and other things have never once been mentioned… Thank you mum. We love you and dad so so much too!

Every day 6,000 people take on a new caring role in the UK. Up and down the UK there are 6.5 million people caring unpaid for an ill, frail or disabled family member or friend. These people are called carers but they would probably say "I'm just being a husband, a wife, a mum, a dad, a son, a daughter, a friend or a good neighbour." (http://www.carersweek.org/about-carers/what-is-caring graphics also from this website)