“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)

 

 

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!