I don't like it but I understand

I am very lucky to have the close friends that I have. They always seem to have my back, supporting me where they can and trying to understand the different events that I go through.

I understand being my friend can be hard, that I can be difficult and stubborn and to listen to me if my mental health decides to kick in. If you missed it Ally wrote a post for me last year about that very topic.

Despite this, many of my friends stick by my side but there is always a phrase that I hear and this last month has been no different.

“I don’t like it but I understand”

This isn’t anything to do with my mental health but more to do with my physical health.

They see me struggling and going through horrific events and they say I do far too much and I should rest more; however, as you all probably know, I don’t do this and I don’t seem to listen.

Muscular Dystrophy is a tricky thing.

Every muscle in my body is deteriorating and not a single one is staying strong for me. Putting it bluntly, my muscles are wasting away at such a rate that it will eventually kill me.

This sucks, I know it does, but there isn’t anything that I can do about it.

If I exercise then potentially I’m putting my muscles under strain which could do more damage; if I rest and don’t do anything then I am allowing my muscles to deteriorate quicker through lack of using them.

Ideally I would need to do the perfect amount of exercise and have the perfect amount of rest.  Do you know how hard that is with a progressive illness?

I could make things a lot easy and use a wheelchair but as the above states I would lose the use of my legs very quickly. I could do less with the boys and have slower, less physical days.

I can’t stop though. I have to carry on living the life that I'vebeen given and live it to the fullest.

I was 13 years old when I started showing major symptoms and it changed my life. That is an age where you are starting to be shaped into the adult that you will become and for me I knew I would be one that would always carry on and enjoy life. I didn’t want to be that person who sat at home and allow this disability to define me.

What a lot of people don’t know about it is that it is a genetic condition; subsequently, there is a chance that the boys have inherited it too and with that I don’t want my children to grow up to give up at the sign of trouble.

Yet, it is this fact that keeps me going. I don’t want my boys to inherit my illness, of course not, but I do want them to inherit my passion for life.

I have done so much already with my life and am thankful and have achieved some truly amazing things but nothing more so than the boys.

I get for my friends that it is tough and they don’t like seeing me suffer and struggle but I do hope that they understand that I am doing it because I want to live.  

I choose life.

I choose the life where I Home Educate the boys and build more than just education.

I choose the life where I am a Dad and parent the boys through every step of their development.

I choose the life where I live with my loved ones building memories.

It is that simple.

I know full well that I push myself to the point where I am exhausted and tired with a severe level of pain every day.

Ally recently wrote a post about her view on being my friend and how she struggles knowing the difficulties that I go through. It is good to read from her point of view but I wanted to highlight an opinion from it "it’s his problem, not mine, so why should I get upset?"

Getting upset is okay but it isn't something that is easy for the ill person to deal with. This may sound harsh and I don't directly mean it too but they have this heavy, soul destroying, burden that they are struggling to push through. 

The people supporting them will obviously be upset and devastated too by events but the person doesn't need to be putting a brave face on and help others through something that they are struggling to deal with themselves. 

Instead hold your tears, listen to what they are going through, empathise with what they are going through and try not to favour sympathy and pity and most of all grasp and embrace the passion that they have to choose the life they live. 

I am sure that having to watch someone you care about struggle, be in pain and slowly decay in front of you must be hard but I love that they push through those feelings for me. They will never understand fully what I go through but I hope they can learn to understand the choices I make.