Hope
So it's been a while since I last wrote, a lot has changed and a lot has stayed the same, I guess. Since the start of term in September I haven't had an episode, I've gotten incredibly tired and not felt quite myself, but as of yet I haven't lost any time. Considering it's been 2 years since I was in any form of structured day to day life, let alone structured education, I've impressed myself; if you were to ask me or anyone close to me a year ago, what I would be doing now, I don't think anyone could give you an answer. My life had no direction, nor did I much care to find any. If you were to ask me the same question now, I still wouldn't be able to give you a direct answer, but I have more of an idea as to what I would like, and my goals are now more achievable, rather than just dreams and fantasies.
I still don't look at my future with much hope though, I don't aspire to do things that will make a difference in the world, and I don't set myself goals like I used to; my plans now are simple, I want to lead a normal a life as possible. I'm tired of the drama, and I'm tired of having to have back up plan after back up plan, preparing for every scenario possible. Don't get me wrong I have hope still, I still see joy in things, and I don't see my future having no meaning. I just don't have as much optimism as I used to. I've had people tell me that they understand my lack of optimism, with all that I had before, having my life mapped out, and no one had any doubt that I wouldn't achieve what I set out to do, compared to now, only just having regained some sort of future, something to work towards, and the glimmer of hope finally returning.
University has helped me regain my independence again, but at the same time its introduced more stress into my life. Any University student could tell you how stressful it is, and I'm sure those not in University could guess it; if there's one thing I've learned about my condition, it's that stress, good or bad is not a good thing, and more often than not triggers and episode. I can't answer why I haven't had an episode and lost time yet, considering I'm under more stress than the past two years, when I was having back to back episodes; but I also can't say that I have been perfectly well over the past three months, since the beginning of term either. Over the years of getting to know my condition, we have worked off of a traffic light system: red, amber and green, red being full blown episode, childlike voice, no memory etc, amber being the in-between, fuzzy head feeling, chronic fatigue like symptoms, but still retaining my memories, and well I don't think green needs much explaining. I wish I could say that the past three months have all been green, I have had a lot more amber periods than I normally would; amber days used to be short and normally followed by red periods, but now it's as if my amber periods are getting larger and replacing my red ones.
I don't want to make assumptions, nor do I want to get my hopes up, but over the years I have spoken with others who have the same condition, and many doctors have said the same as them. It is thought that my condition, can 'burn' out so it may not be life long, but more often than not people have found that it does continue, it just manifests itself in other ways. I can only hope that my lack of red periods, and the increase in amber periods is it changing for me; for now though I am content with how things are panning out, I may not have full control still, but I'm finding more and better ways to cope, which would give anyone hope.
I still don't look at my future with much hope though, I don't aspire to do things that will make a difference in the world, and I don't set myself goals like I used to; my plans now are simple, I want to lead a normal a life as possible. I'm tired of the drama, and I'm tired of having to have back up plan after back up plan, preparing for every scenario possible. Don't get me wrong I have hope still, I still see joy in things, and I don't see my future having no meaning. I just don't have as much optimism as I used to. I've had people tell me that they understand my lack of optimism, with all that I had before, having my life mapped out, and no one had any doubt that I wouldn't achieve what I set out to do, compared to now, only just having regained some sort of future, something to work towards, and the glimmer of hope finally returning.
University has helped me regain my independence again, but at the same time its introduced more stress into my life. Any University student could tell you how stressful it is, and I'm sure those not in University could guess it; if there's one thing I've learned about my condition, it's that stress, good or bad is not a good thing, and more often than not triggers and episode. I can't answer why I haven't had an episode and lost time yet, considering I'm under more stress than the past two years, when I was having back to back episodes; but I also can't say that I have been perfectly well over the past three months, since the beginning of term either. Over the years of getting to know my condition, we have worked off of a traffic light system: red, amber and green, red being full blown episode, childlike voice, no memory etc, amber being the in-between, fuzzy head feeling, chronic fatigue like symptoms, but still retaining my memories, and well I don't think green needs much explaining. I wish I could say that the past three months have all been green, I have had a lot more amber periods than I normally would; amber days used to be short and normally followed by red periods, but now it's as if my amber periods are getting larger and replacing my red ones.
I don't want to make assumptions, nor do I want to get my hopes up, but over the years I have spoken with others who have the same condition, and many doctors have said the same as them. It is thought that my condition, can 'burn' out so it may not be life long, but more often than not people have found that it does continue, it just manifests itself in other ways. I can only hope that my lack of red periods, and the increase in amber periods is it changing for me; for now though I am content with how things are panning out, I may not have full control still, but I'm finding more and better ways to cope, which would give anyone hope.
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