Dreams verses Reality. Ah yes, isn’t this one of the biggest struggles of living with a chronic illness. The main culprit being chronic fatigue! We all have the ability to dream and this is something that the illness doesn’t steal from us. While it is a beautiful thing and something to cherish, it also sets us up for disappointment time and again.
A perfect example of this is me getting engaged and planning a wedding. Something that encapsulates a diverse range of emotions. Whilst getting engaged has been very exciting for me, it has also highlighted how little I can do. I haven’t really been able to celebrate properly. Sure I’ve had celebratory meals with friends and family. But the amount of effort it takes to participate in such events means that I have been in survival mode. It’s hard to truly enjoy oneself when you have to push so hard. I guess what I’m saying is that it’s a huge mental and physical task to celebrate when weighed down by sickness. This then leads to frustration, highlighting how crappy my life really is. I’m not choosing to be negative at a time when I should be positive and joyous. I’m just simply saying that my illness doesn’t obey and go away so I can celebrate.
Most people feel light and free all the time, which means they can lightly and freely enjoy a celebration. Whereas when you have chronic fatigue it is a huge struggle to even listen to someone speak sometimes. Last weekend I was at a family christening and I was sooo tired. My partners aunt who I love was telling me a story and it was like I was on drugs and her face was just there moving in front of me and there were noises coming out of her – whawhowhawho….. That’s what I was hearing anyway. She was just talking and I was just nodding my head thinking I have to get out of here. That’s just an example I guess.
So back to my wedding plans which has again highlighted the whole dreams verses reality scenario. Its fair to say I have freaked out a few times. I booked my wedding venue last week. I am getting married 17 December 2011! It is going to be a very intimate affair of twenty six people, if even, just immediate family. I did a lot of looking at venues online before hand. Thank God for the Internet, for those of us with chronic fatigue!!! I also found my engagement ring online : ) Anyway, I’m having it in a private Manor house (have a look if you like) about 40 minutes away from where I live. My family get exclusive use for two days. So I went to see it last week with my parents and we booked it. I was probably out for six hours altogether. I had a complete meltdown when I came home when my partner started asking me about it. My brain was in shut down mode and I just felt so overwhelmed by the whole thing. I even said I don’t want to get married, as I’m just not able for all of it.
This is what I mean when I say dreams verses reality. I am looking at getting married as a welcome and happy distraction from my relatively depressing life. It’s a positive goal to want to achieve. Hopefully I will see some improvements by that time. It’s a cause for celebration for me and my family, instead of worrying about me. I have fun things to talk about with people now, instead of always feeling I have nothing but depressing things to talk about (for example, “so what have you been up to?”. Hmm let me see… I spend 90% of my time in bed. Should I make something up : ) )
Let me say my feet are firmly on the ground and I’m not just getting married so I can have a nice distraction. I’m getting married because we love each other very much and we have won the battle of the last few years and it has made our love stronger. We want to be partners for life.
So the dreams are part of the planning. However, the reality of it is that the participation of the planning is a big struggle for me. Most healthy brides to be find the year before very stressful, so for someone with chronic fatigue it’s hugely overwhelming. I have seen a few of my demons come out to play. For example my father has happily offered to pay for the big day and had always intended to, for which I am eternally grateful. But it gives me anxiety as I have already and continue to need his financial support for just living. This in turn highlights to me how much of my life has failed and causes great frustration about not being able to work and reach my ambitions.
So there you have it really. Dreams verses reality. The struggle of balance living with chronic fatigue and chronic illness. I am a positive person and I mostly grab on to those dreams and live them as much as possible, but I can’t avoid my reality. I guess I will have to look on this dilemma as another go at understanding where my life is today and to learn how to better live with my illness in a harmonious way. All in all I feel this wedding is going to be a positive thing for my illness. Lots of hopes, lots of dreams…..
That’s all for now folks. I would have liked that to be more coherent. But hey, it's the best I could do : )