Lets say my name is Jessica, it’s a pleasure to meet you. My partner in crime is called David, and we have a little furbaby named Cooper. For the purpose of this blog I shall be changing names to make it possible for myself to write more comfortably. Sounds crazy I know. Anyway, David and I are heading towards our 4th year of dating! As neither of us asked one another out.
We both have full time jobs, both very different from one another. I work a typical 9-5, while David works from home, an impressive 24 hours a day, 7 days a week. I’ve never known anybody who works as hard as my David does, and there’s no way I could do it.
So, what does he do?
He suffers from a little disease known as Cystic Fibrosis. It may not pay the bills, but neither does a full time mother, both very different and possibly just as exhausting and time consuming as each other. I’m surprised we find the time to spend together some days!
Hopefully, this blog is going to help me talk and open up more. This wont be a ‘What its like dealing with and having Cystic Fibrosis’, but more along the lines ‘What it’s like living with and loving someone who suffers with Cystic Fibrosis’. It’s hard having to live with the fact that the person you love wont live forever. That you most likely won’t get to grow old together, no matter how positive you look at life. Sometimes, you must face reality.
This Blog is my Diary and It will help me.
And if it can help other people and bring people together to talk, then even better.
It’s been so tough. I feel like he’s trying to push me away, but I’m too stubborn, it won’t work. But his efforts are killing me. He doesn’t want me to stuffer, he thinks he’s wrecking my life. He says I’m young and shouldn’t have to go through any of this, but my argument is neither does he. Why should he be alone? I didn’t choose to love him, I didn’t choose to fall in love with him. I can’t control my feelings, and if we only get a short amount of time together then I’m happy that time was well spent, with my best friend and soul mate.
I was just listening to the song ‘Perfect’ by Ed Sheeran. I got to the end of verse 2 before bursting into tears:
Well I found a woman, stronger than anyone I know
She shares my dreams, I hope that someday I’ll share her home
I found a love, to carry more than just my secrets
To carry love, to carry children of our own
We are still kids, but we’re so in love
Fighting against all odds
I know we’ll be alright this time
Darling, just hold my hand
Be my girl, I’ll be your man
I see my future in your eyes
Everything fit perfectly until that one word came up.. Future. Even just writing that word makes my heart swell and my tears run. Growing old together is the one thing I wish we could do, it hurts me so much that won’t happen…
Everyone tells you to look on the bright side of things. I try and take this approach in every aspect of my life. But when did it start to become fake? Sometimes I feel like I’m telling myself things aren’t so bad, to make myself feel better about life.
The truth is, I’m happier when I think realistically. Yes, life is defiantly better knowing that you don’t have it as bad as most people, but it can effect you just as much as anything and everything else. Truth be told I will always be a little sad, everyday, every hour and every second of a minute. And Iv come to except that. Iv excepted that my partner suffers from an incurable decease, that we can’t have our own children and that we most likely will not grow old together. We won’t have a wage income of an average couple due to him being unable to work, we can’t go and travel the world because who knows what he might catch? I’d rather stay and have fun in England for the next 6 years then go to Greece once and only have another 6 months together. I know we shouldn’t live like that, I don’t, but it is his choice to weather or not he want to take that risk, and he doesn’t. I can’t blame him.
So the point to all this, is that even though this is a very short list of the many things that we have to deal with, is that we love each other and that it makes up for everything!
I would rather spend time with my soul mate and loose him, then never meet him at all.
I have always battled with the little voices in my head. How do you cope with not knowing how your future will turn out? We could have another 5 years together or 5 months. I guess all you can do is live to the utmost full and healthiest life possible, but you can’t hide away from reality.
People have come to me and asked me, ‘How do you do it?‘ The truth is I’m not doing anything, I’m not coping and I’m not as strong as I pretend to be.
I know in my heart that I need help, but the thought of talking to someone about my ‘problems’ is terrifying. I’m not the type of person who likes to show/share her darkest feelings. I should talk to my partner but he deals with so much already, I can’t imagine throwing my crazy feelings on top of everything. He doesn’t need to know that I’m worried about the time we have together and how I’m watching him deteriorate, because he already knows, he’s dealing with the same demons as myself.
I am trying other methods of self help, such as writing and speaking to anonymous people on the internet. It does help, it gives me a sense of release, like people are listening to me and knowing that I’m not alone.
Are there other methods people find that help them?
How do you do it?
Let’s start from the beginning. David and I met in the most Common, British way possible. A night out on the town. 3am in the morning, at the cash point and in the need of water, food and sleep. I’d never taken anyone’s number before but for some reason he seemed worthy of it! Lucky for me he wasn’t a one night type of guy and we ended up going on date after date after date.
David told me right from the get go what he suffered with, I knew nothing of it and he didn’t want to talk about it as we were only dating at the time. But I’m a very curious woman and did a bunch of research into the subject. I remember laying on my bed, food in one hand and laptop in the other. When I read all the sites and watched all the videos it brought me to tears. How could he have such a life threatening disease? He looks healthy! Iv never herd him cough, or seen him take medication. Am I reading the right article? Anyway, so after hours of laying in front of my laptop like some little child playing there computer games all night, I decided not to tell him I pretty much knew EVERYTHING. I knew in my mind that an illness or disability shouldn’t get in the way of my feeling for this man and they didn’t, not once did I include Cystic Fibrosis as a factor towards our relationship. You could get together with your soulmate, and find out later on they have cancer, or get hit by a car and become immobilised. Would you then decide not to be with them just because they can’t walk? Or because they are too ill to get out of bed? No. Well I wouldn’t.