Love my life?

For the last 10 years I really loved my life. I loved what we (me and my wife) built together. I felt like I had arrived and that all the problems from before were finally banished. Ok there have been ups and downs but on the whole it’s been the best time of my life. But along came this diagnosis and that knocked me back (us actually).

Part of the problem for me was allowing myself to love my life again. I thought, how could I love my life when I have this disease hanging over me? But I was looking at it all wrong. ALS won’t kill me. Life will kill me. And that’s the same for everyone. So nothing has changed on that score.  Ok I know it looks like I am shifting the blame from ALS to life for my demise. But life kills us all eventually. Sp whats new really? Whats changed?

What has really changed is I (and we) have a massive opportunity to excel. I know that sounds management speak but that’s the best way I can put it.  And I am at my best when I have a problem to overcome. And this is a big problem to overcome and learn to live with.

Plenty of others have life challenges and they meet them head on and get on with life. And that is where I am. Medically, ALS is a critical illness but in real terms, its something that can be managed and controlled. 

I am inspired by what I see.  By people coping with this condition and other conditions. There is a chap here where I work (yes I still work) and he is on sticks. And he struggles to walk. I often speak to him if I pass him and I think to myself, if he has such a positive and cheery outlook why can’t I? Just because I have ALS doesn't mean that I have to be down? I am not used to be being down and it does not suit me. So this is my way to love my life again.

Its not all about you.

Its also those around us. Those that care for us and love us.  Its very hard to care for a nightmare. Imagine you looking after someone and they act up and create mayhem. 

And I get that this condition can make you a total nightmare. But this is not good. They are your loved ones and they are losing you.  Losing you to this awful disease. They will be going thru the same grief stages as you are. And there is no quick fix or right way to behave. Just be mindful that someone is trying to do the best they can for you.

There is a vicious circle that can develop and its one that feeds off each other. That is guilt and burden. You may feel guilt that you’re a burden on someone. Or you may feel guilt that you cant ever do the right thing for someone. Guilt is a useless emotion. Unlike anger (another useless emotion) does not motivate us to actually do something. It just makes us shrink. So if you’re a ALS Warrior like me, accept the help that is given to you with a cheery wave and show that you appreciate what is being done for you. A thank you and a show of appreciation goes a very long way. No one likes to feel undervalued and believe me, you really need this person. So look after them. 

A little about me.

My names Chris and I have ALS\MND and this is the first time I have ever done anything like this.

I was diagnosed 10th October 2016. At the time of writing this. That was only 3 months ago. I am married to my wife Alison. To say that she is my rock, my soul mate my wing man is an understatement. As I progress with this disease she will no doubt be my carer. Not something I ever envisaged or wanted.  But I want to say this; Every fibre, every cell, wants to stay with my Wife for as long as I can. Even when I cant talk, cant walk and ALS has taken everything from me. I want to stay alive to be with her. And thats my job now. To live.

So this blog is not about pity or sorrow or anything like that. Its about survival and hope as I am a survivor. I come from a long line of tough survivors so thats what I intend to do. Some of the things I will be saying wont be very nice. Hard truth's are not nice things to impart. But it is what it is. And sugar coating things is not me. And I am too old and bad to change.

So why Warrior? Warrior's are fighters. And I am fighting ALS. So it seems a good title.

So who am I? I am just a normal run of the mill guy. I have done nothing special. I am no one special. And I have done nothing special with my life. Apart meet my wife that is. And for some reason, I have had to fight all my life. I always thought that everyone was the same. But I have found out that is not the case. But that doesnt matter now. I am at my best when I have a good fight ahead of me. It brings me alive. And this time? I am fighting for my very life.

I hope to post regularly. When something happens, I will try and write about it. I hope to impart knowledge. To help others on this journey. And above all remain positive. Nothing bitter and twisted and woe is me from me.

Onwards and downwards..........