The Foggy Haze

So when I got diagnosed, these are some of the things I wasn’t expecting to be in my life…

My head is ‘foggy’, that’s the best way to describe it. Although some days I would say my head is ruined!

My memory is appalling, not my long term memory, that’s actually really good. It’s my short term memory that’s really bad. As an illustration, I’m sitting here watching TV this morning, the ad break comes on and by the 2^nd ad I had completely forgotten what I was watching. I do this all the time and will often flick between channels on the break and end up watching parts of 3 or 4 shows in an hour.

Last week I was standing in the middle of my kitchen about to do some tidying up which is quite an achievement for me, and I thought I’d like to have a little dance while I did it. So out came my I phone and I knew what music I wanted… I knew but I couldn’t remember the artists name… I tried but I couldn’t! I could see the album cover… but I just couldn’t remember. I sat on the floor and I cried. I don’t know why this particular incident upset me so much. I forget all the time, but maybe there is something about the pain free hours I have at the moment that make the things I tolerate when I’m in pain, because the pain is my focus, that bit worse.

It was Calvin Harris for anyone who is interested!

When this process started I was reading for my PhD. This is when things started to go wrong and apart from the pain my most obvious sign that I was unwell was my new inability to read anything… and I mean anything. I would read a sentence and by the time I got to the end I had forgotten the beginning. Needless to say I didn’t complete that degree!

Latterly after my stimulator was implanted I completed a masters in Social Work. But not before I requested a formal assessment of my situation. It was at this point that I was diagnosed with acquired dyslexia. This broke my heart. Education has always been at the core of my life and after undertaking GCSE’s, A levels and 3 degrees with relative ease and enjoyment I was heartbroken. But the support I got was phenomenal and I learnt to learn differently. But it’s not easy… its not me.

I love writing and reading but audio books and blogging are the nearest I come to it nowadays. I miss it.

That perpetual feeling of having forgotten something is depressing. ‘What did I come in here for?’ ‘can you please pass me the …. Erm… that… the red thing…sauce… please…ketchup!!!’ ‘where did I put my keys?’ It’s constant every day.

Word recall is frustrating to say the very least. I forget or rather can’t produce one word in about 20. Some days it’s much much worse.

When there is a TV on, or we are on a noisy train, any background noise I can’t make sense of what people are saying to me. I have to be able to see their face to read their lips… there is nothing wrong with my hearing I just can’t process the different noises. I don’t think there is anything wrong with hearing…maybe I need to get that checked out just to be sure!

So everyday, regardless of the pain level is ‘Foggy’. Words are a challenge to me, reading writing and hearing are a problem to me. There are a number of hypotheses… the medication (especially the anti-epileptics are famous for this), the illness, the sleep deprivation. Certainly changes in all three for me have had an effect at some point.

So if you see me struggling… just be patient with me. I’m trying to make sense of this world through the fog!

“What would you do if your dream of a totally pain- and symptom-free life, came true?”

“What would you do if your dream of a totally pain- and symptom-free life, came true?”

 

The above is blog challenge number one posed as part of the Migraine and Headache awareness month 2014 blogging challenge.

I’ve got so much to talk about when it comes to Cluster Headaches that I must admit I’m a little stuck for words when it comes to a pain free life. It’s been a long time since I’ve let my mind wander to such things…but ill give it a good go!

When I think about it… these are the things I would do

Get Fit… if one day this illness disappeared I would devote time to getting my body fit and healthy again. So many years of inactivity, numerous drug therapies and surgeries have taken their toll. I used to love to run; it was my stress free place. Running and swimming would become a huge part of my pain free life. But this is me… inevitably I would break or strain a limb soon enough!

Say Thankyou…wow, this could become my full time job. There are so many people who deserve so much for what they have done for me and with me in the last two decades. I would love to have the time and energy to come up with amazing, creative and unusual ways to say thank you. From the Dr’s and nurses who have made things easier along the way, friends and family who genuinely came along for the ride with all their hearts, then the heart of my fight.. my parents, my wife and my neurologist… the thank you’s would rain down on all of these people!

Time for me to be mummy… I am so proud and lucky to have 18 kids call me Aunty Katie… I love them all to bits. I would of course spend more fun and quality time with them if I was pain free…they would get spoilt rotten. I love being an aunty. Love it so so much. But I’m ready to be a mum now, I’ve been ready for 15 years. As a couple we are so broody… if the pain went away there would be no stopping us!

Go back to the Career… I am a health psychologist and social worker by education and trade. Before I got sick the focus of my career was exploring the way in which families function when one member of the family is chronically ill. I know, I’m aware of the irony here!! I would love even more now to pick this up again with my experience as a social worker and as the ill person! I’m not sure where this work would take me now but I know I want to make a difference. I care about being independent and for us as a couple to have financial independence, but I don’t need to make a fortune to be happy.

If cluster headache still existed my campaign of education, information and advocacy would continue. I would devote even more of myself to improving the quality of life of people living with CH.

Travel… I want to see the world… not just the countries I feel medically safe in, not just ones I think I could cope with the flights, the climate, the food, the isolation.

There is a lot of thought put into the above dreams and goals.

However when I close my eyes and dream of a pain free life it can be encapsulated in one moment. My wife and I got married on our 10^th anniversary, with just 2 witnesses. This was done for various reasons but it upset both of us and a lot of other people that it wasn’t what we wanted.

When I close my eyes, I am standing in a field, with a view of the sea with my wife next to me and our children in our arms. We are surrounded by our friends, our family and others who we love. There are beautiful flowers in a huge tepee tent with afternoon tea and a hog roast. There are bouncy castles for the kids and the grownups! Our family is being blessed as a little unit and our large amazing extended ‘family and support group’ are having a lovely day as a thank you for their unwavering love and support

I know I don’t have a pain or illness free future. But it has been nice to dream of travel and careers and a ‘normal’ life.

 However I may be mad to think that that perfect vision of the perfect moment, the thing I see when I close my eyes… it might come true regardless… I thought CH had knocked the eternal optimist out of me... maybe she’s still there! I will get my wedding day with my wonderful wife and the children we dream of!

living your life... the best we can

Life is such a roller coaster with this illness. I have been having some good days recently, some really good days. Some days with clear daylight between attacks where I can be in charge. I have adapted so quickly...crazy quickly… to feeling well. I have an action packed routine every day now that starts at 5:45am as soon as my attacks finish and goes through to the next pain!

I’ve got so much ticked off my to do list in just 3 weeks

Inevitably, with the 40 mins to 2 hours’ sleep a day that that has been giving me, on the back on months of being ill 22-24 hours a day my body is now rebelling. After just 3 weeks of ‘life’, I’m ill. My Cluster headaches are starting to creep into MY space in the day time and I’ve had 3 infections this week alone and woke up today with a raging sore throat.

I can’t sustain being ill all night and living all day

But I refuse to sit and rest and sleep during the pain free times… I want to be living and enjoying the limited time that I get blessed with good health. But 3 weeks is about my limit. It’s at this point that despite having sticking to my meds and charging routine I realise that in the balance of my life my health needs more attention. I need to rest more (I HATE THAT!). I am very focused on eating healthily at the moment but sometimes I forget to drink enough so that needs attention. But rest is the main thing.

Pre Cluster headaches I lived life at 100 miles an hour and I forget that the good days now can’t be lived at the same pace. It so unfair though, when I was living my life like that, I had plenty of time to rest… I could rest anytime. Now I can’t rest when I’m well… it seems like such a waste of ‘good’ time. It’s all in the balance of things. If I live life too fast I end up feeling like I do today, curled up on the sofa under a blanket with a number of infections, feeling rubbish, when I had a lovely day with my wife planned.  

There is a balance to be found… time to rest, time to be Katie, time to stay well by eating, drinking and medicating the best I can, fun, exercise and a social life. I thought I had found it…but I’m so run down its silly.

This illness is not just a headache, the lethargy and exhaustion is all consuming. I don’t mourn my old life anymore; I grieved for it a long time ago. However I feel lazy, or that I will be perceived as being lazy if I make time for rest. I want my life in between pain to look like it used to; but it cant.

In order to make the most of this good time that my neurologist and I have worked too hard for, I need to get the balance of my life right. However after 8 years of living with this illness chronically I am yet to find the right balance.

I can’t do this rollercoaster anymore… I need to find the wellness balance for me and my family.

The worst pain I have ever felt…10/10

Hidden conditions are frustrating… you have to tell someone, including the doctor how you are feeling and what is going on. I wish there was a magic devise like a scanner, or a blood test that would explain what is going on in my body.

Pain is the main symptom of Cluster headaches… reportedly it is the worst pain condition known to man, for those who have experienced both childbirth and cluster headaches they say that CH is more painful. I’ve watched ‘one born every minute’ everyone copes with the pain of childbirth in a very different way! I’ve also seen videos of people going through a CH attack, including myself and I can say that we also cope differently too.

I’m very quiet…I rock, kick out, bang my head with my fists, slap my face, push my head against cold hard surfaces. I hate to be seen like it… very few people have and will see it.

But that experience has to be qualified and quantified when I see my doctor. He asks the usual questions? How much does it hurt on a scale of 1-10, where does it hurt exactly? What else is happening at the time? How long does it hurt for? How often am I in pain?

I understand that without this information my consultant doesn’t know a) what’s wrong with me b) How to treat me

But what I really want to say is…IT JUST HURTS! Like no pain you would ever know! It just hurts in my head and it lasts for what seems like forever. When you are in that much pain you don’t stop to analyse it. In fact you do the exact opposite; you have to focus on anything but the pain. I have developed very good coping strategies that involve very much ignoring the pain the best I can.

I often hear and see friends talk about being in pain with toothache or a twisted ankle and I’m sure would describe their pain as a 10/10. I’m not saying that they are not experiencing pain that is the worst ever but surely it wouldn’t be a 10/10 to a cluster headache suffer who experiences ‘the worst pain known to man’ on a daily basis.

I broke my foot last year and when the DR in A&E asked me on a scale of 1-10 how much it hurt…and it did hurt!... I said a 4-5. He was shocked until I explained that I am a CH sufferer.

Pain is so objective… it’s based on your own tolerance, your own pain experience, your coping strategies. I hate describing my pain… obviously I want to have accurate diagnoses and best possible treatment but I genuinely think I would report the same pain differently from one day to another depending on factors such as how much sleep I have had, who is with me and how many attacks I have already been through that day.

What if I am not consistent when reporting my pain? I am sure there is no consistency across the population of cluster headache sufferers! What one of us describes as a 9 another may describe as a 5.  This is a real challenge for the doctors…it also is a challenge for me… I have described the pain the best I can and as a result have been diagnosed with cluster headaches; paroxysmal hemicrania; and, hemicrania continua. Of course I trust my consultant’s diagnostic skills but what if I have misled him and may have something different or something else? I don’t know if I report the level of pain accurately, maybe there are other treatments that would be more appropriate or more effective.

So much of the diagnostics are left to me… there are no blood tests or scans of my dream scenario. All the therapeutic decisions are made based on my version of events, which is a lot of pressure! I am lucky that I know whatever rubbish falls out of my mouth will be interpreted by one of the leading and best headache specialists. What if the person you are seeing doesn’t know one headache disorders unique presentation from another? What if you haven’t got the ability to communicate?

How do you communicate this pain to a doctor in A&E, a doctor who sees patients with traumatic injuries every day who of course say their pain is 10/10… which makes sense… their leg is broken and the bone is popping out.  Then their next patient has a ‘headache’ and is also saying their pain is 10/10.

As a psychologist I developed scales and measures for things like, quality of life, family functioning and locus of control. I know how a standardised pain scale, such as the KIP scale, is both useful and practical.  But does it really tell you anything? Is it not more of an indication of your perception of pain as opposed to a measure of actual pain? But then surely pain can only be measured as we perceive and experience it.

I think my perception of my pain had evolved over time having had 33 years of pain experience especially the last 8 as a chronic cluster headache sufferer. It depends on my mood; my sleep state; my location; my experience of being pain free (when you are pain free and pain strikes again…for some reason the pain is worse!)

My reporting of my pain is affected by how desperate I am, how much ‘pain free’ time I have had to reflect on the pain I am having.  My answer of “I’m fine’ or ‘I’ve been ok” is now met with a look of concern by my consultant as this normally means I am anything but fine or ok.  But who wants to give in and concede that the beast has beaten them… not me!

Pain… it is our curse… it is hard to describe what it feels like; impossible to measure; and apparently impossible to get rid of!!!

More knowledge is needed within both the general and medical population, and more research is needed into this horrific and often ‘all consuming’ condition. In the mean time we do the best we can to explain the pain we are feeling in order to receive the best treatment and advice to try and manage our pain, ultimately striving for a pain free day!

What the numbers say...

Just a little food for thought... not all stats are current as we are not the subject of much research, but they still tell a story

0.1%   of the population have cluster headaches

21% of patients are given the correct diagnosis at their 1^st appointment

5 years is the average time between onset of symptoms and diagnosis

10-15% of Cluster headache patients are chronic suffers

6 men to each woman who are living with cluster headaches

4 hours of undergraduate medical education is given to ALL headache disorders (worldwide average)

22%-55% of chronic suffers report suicidal ideation (depending on what research you look at).

100% oxygen at a high flow rate is needed to treat Cluster headache attacks

20% of Cluster headache sufferers in the US reported losing a job as a result of their Cluster headache.

8% of American cluster headache suffers are unemployed or on disability.

0.004% of hospital appointments in England (485) were for cluster headaches. This is 12 years old.

The darkest of times ...

There are many side effects and consequences of Cluster Headaches (CH), sometimes they affect my life as much if not more than the pain itself.  However,  the more friends I make who share my fight with CH the more I meet who are also fighting mental health problems, mainly depression, anxiety and panic…Just like me.

This is major heart on my sleeve time… but it needs to be said.

Over the course of my journey with CH there have been dark dark days, for me and my loved ones. Those around us may not share our physical pain but they certainly come along for the emotional journey. This is my story, every journey with mental health is different , but I think others may see their story reflected in mine.

The battle to get diagnosed, the battle and balance of finding the right treatment, the ongoing war against the pain, the side effects and the medical system in general. The list continues with financial worries, employment issues, a lack of understanding in the medical and general community … Is it any wonder it got to me in the end.

Personally I have experienced depression up to and including making a suicide plan, anxiety including panic attacks and a fear to leave the house and have at times self-harmed. I’m a qualified social worker with a psychology background, I spent a lot of time over the last 10 years working for a national charity who support those living with mental health problems and dealt with a lot of young people in crisis…. But I couldn’t help myself.

Sometimes I kept these feelings to myself… These times were the darkest by far. There is nothing worse than these toxic thoughts in a deep dark hole when you are all by yourself. You are desperate to find a way out, but without someone to help you, you just dig yourself deeper. The only way I ever got out of this hole was to open up and talk to someone. This was usually when things hit crisis point. I have enough tablets in my possession to kill all the inhabitants of a small town…If I wanted to kill myself I have plenty of opportunity but something has always kept me tied to this life that I love.

Other times I confided in my wife, my parents, my siblings, my extended family and friends. But this is hard. It’s a balancing act. Those who are closest are already shouldering so much of the practical and emotional burden, as such they are best placed to understand how you feel as they see it every day, but you are desperate not to burden them anymore that you need to.

I leaned more on 4 or 5 people in particular and that in itself after 8 years makes it really hard to keep going back to them with not only CH drama but mental health concerns too… I really felt like Eeyore with a dark cloud following me that people got dragged into if I got too close. So you isolate yourself so as not to hurt others with your hurt. This takes you back to dealing with things by yourself which I’ve already acknowledged is scary and unsafe.

Then there are the people who are a little further removed from your situation. They sadly or not depending on your point of view, are not aware of the true hell that is CH and therefore,, in my experience are keen to comfort you with statements like ‘At least you are still breathing’ ‘It could be worse’ or ‘when my friend had migraines…’ (AAAARGH). They mean it with the best of intentions but, but well it’s not  helpful.

So I adjusted my coping strategies, I call these people when I need a distraction; I need to talk about anything but what I’m going through. I rely on these people to make me laugh when I need to smile and make me remember the good things in life. I think that’s such a common misconception that people with depression can’t be happy. Yes there have been day’s, weeks and months that I thought I’d never be happy again. But I always am. Depression is a sliding scale and you shouldn’t have to justify where you are on that scale. Just because I’m laughing with you today doesn’t mean that tomorrow I won’t be sitting in my bed unable to see anything but the dark cloud over my head.

I’ve faced my demons, with friends, family and professional support. I am no longer ashamed to admit that alongside my physical health conditions. I have depression and anxiety. All of these things are part of me. I need to be aware of them, the impact they have on my life and the impact my actions can have on them. I am proud of my coping strategies… I have them in abundance and as long as I stay calm I can utilise them. I can’t thank my counsellor more for helping me develop them; they are my toolkit for daily life.

This is just the picture of my roller coaster. One day I’d like to write all of this down, saying exactly what I was thinking, feeling and doing. For now I just wanted to acknowledge the other fight in my life and to be proud of who I am… including all my perfect imperfections!

Never suffer alone… please!

For people in the UK (I’m sorry that’s as far as my expertise can go)

The Samaritans (24/7):

08457 909090

Ouch:

Helpline

01646 651 979

or overseas

+44 1646 651 979

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