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!