"Where there is creativity, there is hope." ~ Donna Karan

Missing Out

by - Thursday, May 20, 2010

I feel like I have been missing out on so many beautiful things that life has to offer lately. I have so many goals and dreams that I want to achieve and see come to pass and none of them feel as though they are going to be fulfilled in the near future. What is happening to my life?

During the past week my fatigue has worsened so much so that I'm contemplating the thought of being placed on the six month waiting list to see a chronic fatigue specialist. I've even started back on a gluten free diet which I once attempted a few years back- that's how desperate I am for energy! I'm finding mornings a dreaded nightmare, trying to drag myself out of bed in a fragile fatigued haze; struggling to find the strength to get through the day while feeling like I've been run over by a mack truck. Some mornings I'm sleeping through my alarm by hours and by early afternoon I find myself in bed again, needing frequent naps. Mustering up the energy just to take a shower is an effort in itself and yesterday I had to miss out on work because the fatigue was unrelenting. It's crippling my life. I see my Rheumatologist next week ,what a relief! The last time we spoke was on the phone when she called me with the news that my rheumatoid factor was elevated. She mentioned that this could be the main reason for the worsening fatigue. Any increase in pain means an increase in fatigue right? I sure hope so. I'm really hoping that next week will provide some much needed answers.

I'm tired of being tired. I'm tired of seeing my friends and family go to work and university while I stay at home and live my life from my bedroom window, wishing that one day soon that would be me again. I'm tired of missing out.

One of the most hardest things I've had to adjust to since being diagnosed with multiple chronic illnesses is having to miss out on so much at a young age. Having to adjust to limited living has got to be one of the most toughest challenges I've faced in my life so far. Inside, I'm still the same person. I have dreams and desires, I want to do things, I want to live my life to its full potential. Physically, although you can't see my pain; I'm different. My body simply cannot do all the things that I used to enjoy doing and being apart of, and this gets me down. Sometimes it seriously sucks. I don't have the energy I had before and the constant pain makes me weary. It frustrates me when I have to turn down a social invitation or something that I really want to do because the fatigue and pain interfere. Learning to accept this as my new life for now is extremely difficult and disappointing. I don't want to live this way, this is not want I want for my life. At times I find myself wishing if only I could go back to living my old life and the more I think about how great my life was before I became ill, I surrender to tears; saddened at how much I have lost. I've lost university, the ability to work more than two short afternoon shifts a week, friendships, my self esteem and my social life. I've watched four years of my life seem as though it has been flushed down the drain. I find myself having to miss out on and sacrifice so much just to struggle to survive the day, the next day and the following weeks. All my decisions are now based on what will be beneficial for or detrimental to my health.

I'm tired of my specialist, friends and family saying "you're only young, you've got the rest of your life ahead of you." Yes, that is true and oh how I know it very well but I'm almost twenty-two. I have been living in a world of pain since the age of eighteen and in that time I've lost countless of precious, irreplaceable memories I could have enjoyed with family and friends. I'm only young and I would much rather enjoy these years being out in the wide world. I will never get these years of my life back and for me that has been such a heart breaking reality, one which I have struggled to face. Learning to deal and cope with chronic illness isn't an easy task. It ain't no walk in the park. I've had to make some major attitude adjustments. Even more so in the past couple of weeks.

A couple of months ago my sister booked a short holiday for herself and our mother and I to go to Tasmania to visit family. At the time the flights were booked I was confident that I would be able to manage the trip. However, since then the fatigue, joint and Endometriosis pain has become difficult to manage, so I made the tough decision to stay behind at home, allowing another family member to enjoy my place while I missed out and lost money on the transfer cost of the plane ticket. I was so angry that I was yet again missing out on enjoying my life and instead sacrificing time with my family for the sake of my health. I had to make that decision based on the fact that I needed to respect my physical limitations and the boundaries of pain. I've had to learn the hard way that it is important to stop and listen to my body and realise when enough is enough, and rest when I have overdone it; even if that means missing out. As much as I hated missing out I knew deep down that I was not well enough to go. I'm in pain and I'm miserable, and that would have made the trip less enjoyable, especially at this time when my pain medication is failing to work and the fatigue is becoming harder to fight. I also had to consider the consequences that the trip would have caused had I gone. Did I really want to spend the next few weeks in bed beyond tired and in more pain? I sure didn't. So, I had to make a choice to be happy with the fact that I had made the best decision, I was doing the best I could to take control of the situation so that I wasn't going to allow myself to become the victim. Sure, I felt upset and angry and yes it seemed unfair, but this is how my life is right now and although at times I don't see it, I still have choices. I have the ability to make intelligent choices. I can choose to be upset, angry and depressed or I can choose to accept my current circumstances, however hard they maybe, and move on. Focusing on the good things in my life.

If I keep wasting all my energy focusing on the things that I miss out on, I then loose sight of the things in my life that I can and still am able to do. Although I can't do the same things that I did before, I can still enjoy plenty. I'm learning to turn the negatives into positives. I'm choosing to look at the bright side, I mean hey I got writing material out of this situation...that has got to be a win! I'm learning to count my losses as gains, and I'm much happier for it.

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