With pain and fatigue comes guilt.
Guilt. It’s something we all experience throughout our lives, ill or not. However, the stomach aching feel of being a burden to those in your life becomes increasingly harsh at times when living along side a chronic illness.
Something for me personally that differs in difficulty, however at times feels like the entire world on my fragile back. At times, it can be my greatest enemy, tricking me into a state of mind I don’t want to be in. The sort of state that leaves you feeling like you’ve wrecked your families lives.
I know that’s not true, no matter how hard it has been to fight, my family have always dealt with it full force, as have I. I know they’re still happy, maybe not all the time but they are.
I’d like to say it gets easier, but overtime things start to become more noticeable with only yourself in mind to blame. I wish I could be healthy, I wish I didn’t have such a huge affect on my family, but no amount of wishing will solve my problem. No matter how tightly you close your eyes.
Being ill, it gives you a new life. A life I didn’t want for myself or my family but a life at that. Which once was a time of joy and happiness, days passing by spent with my little brother playing Lego or creating dance routines, has now turned into all but a fond memory.
They say you shouldn’t feel guilty, it’s not like I asked for it they say. No matter how many times I am told those same exact words, I will always feel guilty for how my health has affected us.
I remember in the summer when I was younger, back at our old house, my brother and I would spend the whole evening in the garden bare foot, playing together. We had a little orange slide in the back of our garden, too big for us now but at the time felt like the biggest slide in the world. One of us would lie at the top, half on the steps, half on the slide. Then the other person would lie flat on the slide, hold onto the other persons hand and the person standing on the steps would have to pull them up to safety. If we couldn’t and we lost grip, we’d fall into the sharks or lava. Whatever we came up with at the time. We could of spent forever doing that, boy were we close. He was my best friend, still is.
We had a lot of days spent like that, my brother and I. We would build shops from Lego, make the funniest dance routines on the trampoline to show mum, dress up together, anything. One of my favourite memories takes place in the back garden, mum sitting on the bench just to the right of the kitchen window. Lewis and I chasing each other round the garden, cartwheels and picking daises. My dad came home from work, made his way to us and the dogs, Golly and Gemma, sat down next to mum and we just spent the evening like that. Something I’ll always remember.
This illness, this thing, it makes me so mad.
We can’t have ‘normal’ holidays anymore. We used to spend two weeks in the caravan up in Scotland, my favourite place to be. Days spent walking in the woods, visiting different sites, playing in the sea and a family game of football. At my worse, we couldn’t do that. I remember we went up to Scotland again this one year, and everyone was so excited to go visit this museum place if I remember correctly. I was so mad at myself for not being able to walk up those damn stairs to just get into the place because they had no wheelchair access at all. They said it wasn’t a big deal and we went somewhere else but that sort of thing sticks with you.
Not only did I ruin potentially good memories for us, but I feel like I ruined a whole lot more. My mum quit work to become her 13 year old daughter’s carer. For a portion of my brother’s life, he grew up without his best friend, his sister. Holidays ruined, anxiety heightened.
With friends, you can very much hide them away from the pain of it. It’s easy. They come and go as they please, they have a choice. They can stay or they can go. However, with family; close family, they have no choice. Just like me, they can’t press the pause button.
I think out of everything my mind manages to focus on, thoroughly flipping over every little thing, taking Lewis’ big sister away from him was the hardest thing I’ve ever had to deal with. He got so mad, and couldn’t understand why I wasn’t able to do everything I could before. You can’t ask a 10 year old to understand that.
No matter how guilty I feel, I will always be thankful for having such a truly amazing family to support, love and help me through my journey. I’m surrounded by such wonderful, selfless people every day, it truly makes everything so much easier. Living with M.E is hard, I imagine watching someone you love go through it is even harder. So thank-you. You may not have a choice in whether I’m ill or not, but you got given hell and you made it beautiful. I will be so thankful if I grow up to become half the person you are.
To my brother; I’m sorry. I’m sorry you lost your best-friend for a while but I have every intention of being there for you forever. Your best friend and the person you should call to hide the poor git you ran over.
To my mum and dad; thank-you for being such amazing parents. You make me laugh every single day. You both have made me the strong willed person I am today. You have both shown me how to dance in the rain.