The future. Moving forward. And the (at times) all consuming guilt that comes with it.
We all grow up, get older and inevitably our own lives have to move forwards… but it’s tough to not feel guilty about the things that your sibling can’t do, or want them to feel as though you are leaving them behind (although I think we feel this more than they do). I don’t know how it is for everyone, but I can talk about how it is for me.
There’s that guilt that I feel I should be at home to help out more when I see how tired my parents are. I know it’s not my responsibility, but it’s hard to not feel partly responsible when I can’t turn a blind eye to the knowing that my parents are exhausted and in need of a break. The older I get, the more aware I am of this along with the fact that while my parents are far from old, they too get older and things get tougher.
So while the future is exciting and full of hope in some respects, I find it hard to plough into the future selfishly without feeling guilty about doing so at times. Anyone else without this circumstance would be planning their future, thinking only of themselves and going for it. I guess everyone is different, but because I have always helped with Joe’s care I feel that I am more aware of everything and just how tough it can be for my family.
However, there is always a balance to be had. I will always do whatever I can to help out, but I’ve learned that hard way that there has to be time for some completely unadulterated ‘me time’. Alongside my family circumstance I have my own life with my own problems, and it’s taken me a long time to not feel selfish for taking some time out just for me. To just me plain old Emily and for just a little while put all the issues to one side and decide who I want to be… I still don’t have a clue incase you were interested!
Today I took an entire day just for me, and I can’t tell you just how much better I feel both physically and mentally. I started my day with a swim at the gym, followed by a jacuzzi and a good chat with one of the old dears. I even put my makeup on and used my body lotion… shock horror. I went home, had my lunch, didn’t do the housework (anyone who knows me knows how hard it is for me to leave things a mess… trust me it’s a massive break through!!) and took the dog to Whinlatter Forest (local to cumbria, and well worth a visit if your not local and visiting) for a big walk to the summit. I came home, flung the hoover around (it was too much by this point!) and poured myself a HUGE glass of wine. And now I am sitting here doing something else that I enjoy… writing this blog. And the best part… I don’t feel even a tiny bit guilty (well not today anyways).
My point is that while there is always going to be a lot going on in your life, and even more so with a sibling with DMD. The future with DMD is uncertain, and so it can feel sometimes that yours is too. For me it’s always been the 10000000 million ‘what if’s’. It’s tough, but you have to keep sight of your own life goals too.
The harsh truth is that whether you feel guilty or not life moves forward, and you have a choice to make. You move forward, or stay where you are while the rest of the world moves around you, because it’s going to happen anyway. At the end of the day, your sibling is moving forward too and they aren’t feeling guilty. They are living their life whether thats progressing from school to college, or getting married and moving out and so should you. You have to think how you will feel in years to come if your sibling has moved out and is getting married and your still stuck in the same position you were because you didn’t want to feel guilty about living your own life and moving forwards.
It’s important to note that I sure as hell don’t have all the right answers, and I write this blog from my perspective and my perspective only. Maybe a lot of you feel the same, maybe none of you do and it’s just me… who knows. But my goal is to try and help by sharing my own experiences good, bad and the downright ugly. This for me is my ‘me time’ and my therapy too because while I’m not about divulging my deepest darkest secrets, this helps me process what is going on in my own life too.
Sending lots of love to you all!