The Incredible Hulk…

Quite a few people have said to me this year that they can’t understand how I manage to write so open and honestly about the topics I address in having a sibling with DMD. Very kind words, but you should really know that the reality is I love writing by blog because I want to help other people, but it is by no means easy for me. I am in general a very open and honest person, I don’t do the BS and I try to write with an honesty that I wish I had gotten from other people in the same position as myself. However, the majority of the times I write I do have a little cry when some of the topics I address force me to reflect. The amount of times I write, re-write and scrap the whole thing and start again is ridiculous. So guys, I am just pretty normal in that respect. I carry on writing even when it’s difficult because I feel really passionate about sharing the good, bad and the ugly in a way that can help support and guide other people at times when I really needed it too.

Something I think we all struggle with from time to time are emotions, and when you have a sibling with DMD more commonly anger. I think it’s granted that we get mad at the situation we are in through nobody fault, but sometimes it’s hard to learn how to process and control that anger in a healthy way. That’s why I thought it would be appropriate to share with you my experience with it and the techniques I use that help me.

We all get mad, but I know that I personally go through prolonged periods of anger that can be exhausting and very difficult to move forward with. No I don’t quite turn into the hulk… although I think my hubby might contest that’s it’s a close call!!

My personal experience has come partly from just not being able to fix my siblings illness. Due to Joe’s condition I think I grew up quicker than most, and was a bit too sensible for my age a lot of the time. I have always been very aware of situations that occur around me from a young age, and the being able to sense when things are difficult for someone else without them really saying anything. This is very much a blessing and a curse because I naturally want to be able to help everyone and fix it or make it better, even if that comes at a cost to myself. I mean how do you consciously turn a blind eye to how someone else is struggling, and not try to do something to help even just a little bit? To me it feels like the natural thing to do. I don’t know that I have always been that way, but as the oldest sibling I feel I have a duty of protection to my other family members. I don’t do it for any other reason that I just want to be able to help, but that comes with it’s frustration because there are some things I just can’t fix, and that is pretty difficult to accept at times.

There a multitude of things that are quite natural to be angry about when you have a sibling with DMD; the lack of support from other people, the unfairness of not being able to fix it, not being able to take away the pain it causes, having to be more grown up than you feel like being, having to understand things about life and the world from much younger than everyone else, not being able to just be ‘normal’ but to name just a few. These are things that not everyone can understand… but we do.

If we are not careful it is so easy to let this anger consume you, and not only is it not healthy, but the only person it’s hurting more is yourself. You have to allow yourself that time to just be pissed off, but then you need to find a healthy release that works for you. I personally swear by the gym. If I’m feeling anxious, stressed or angry I find working out always helps me feel a lot better. It doesn’t take it away, but it does allow me to process things in a more rational and calmer way. The gym might not work for you, but there are lot of things you can try until you find something that works for you such as; yoga, meditation, listening to music, colouring in, cooking, walking etc. If all that fails… wine is always my fail safe!

There are days where I am angry because I just want to be a ‘normal’ 28 year old with nothing more pressing to worry about than why my hubby hasn’t put the washing in for the third time this week! But instead I worry that my mum and dad are struggling, that Joe’s health hasn’t been great, are my other siblings ok? Do they need more from me? Why don’t people see things the way I do? Can people not see mum and dad are exhausted!? On top of, how the bloody hell can he not see the bloody washing needs done!! So you combine normal fails life stresses with stresses that most people never have to worry about, but we wouldn’t be human if we didn’t feel this way from time to time.

All the above being said, let’s focus on some of the positive things that DMD can bring to your life. Some of the good things DMD have taught me are; when all else fails developing a wicked sense of humour really helps, there are happy memories to be found in the smallest of things, I’m actually quite good at caring for people, I have a strength that I wouldn’t have had otherwise, making memories is what really matters, family is the most important gift you could ever have, how to lighten up because although life is tough, everything doesn’t have to be so serious, I’ve learned to love football (through no choice of my own) and I am a better version of myself because of some of the tough life lessons I have had to learn.

Never forget that while you’re busy being angry life is still happening, so find something that makes you smile everyday no matter how small, and remember at least 1 positive thing that DMD has brought to your life every day, because there are more to choose from than you think.

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