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.