Monday, August 26, 2013

he jests at scars that never felt a wound

The phone rings and I lay in pain watching it, knowing there's no way I'm going to make it through a conversation right now, I can hardly talk to the cat, and to whomever was calling I truly am sorry that I did not pick up. For the past few days I've been avoiding life, it seems I've fallen into this fog of pain that slightly disorients me. I know I should call the doctor and make an appointment, but to be honest I'm avoiding him too. After he told me he didn't think they'd ever figure out what ails me, I just lost faith in him as he did in helping me. Although I know I have to see him for the results of my thyroid ultrasound, I just don't want to see him and be discouraged again. Hope is a necessity when dealing with this mass amount of pain, and I can't lose it, it's all I have. Hope that diagnostically there will be an end to the pain, or at the very least an answer. Hope that spiritually what I go through can have some positive effect on others, to bring glory to God, or at the very least console one other person. Although I have my doubts that either will come to pass, or that it has impacted anyone else. It's hard to see through the fog of all of this, to really know if it makes any difference to anyone but me.

Last night I was up till 3 am because I can't sleep. It all just hurts far too much, and there are no more pain killers I can take. I have a bit of a temperature and severe pain in my rib cage and bones. I awoke today puking and feeling tender, but at least the hard painful lump in the cafe of my left leg has gone. Which ensues another debate over wether or not it's worth going into see the doctor over, and at first we agreed that I should but then comes the question of well what else hurts? The answer is too much. So if I go in which problem will the doctor be able to do something about, and if I go in will he assume its all the fibromyalgia since I have so many oddities within. I don't know, and so I digress that it can wait to get worse or better.

It's hard to be in a frozen state, of perpetual pain and unknown. As I have mentioned before this state of unknown pain makes planning in life a lot more difficult. I just want to please everyone, and sometimes I go to far and it's at the cost of myself. I hope people around me can understand or at least, do not take things the wrong way, if I cannot make it out to an event that's been planned. I never mean to offend anyone and it's only because of being sick that I cannot attend. There is no deeper meaning by not attending, nothing implied, no lines to read between. Yet, I feel as though we each come from our own bias perspectives and sometimes don't first think of where the other person is coming from.

Open and honest communication is so important in life, and yet still so difficult, as I sit frustrated by others perspectives. It's interesting how vocal and judgemental people can be about a situation their not facing day in and day out. When they are not the ones dealing with it, I wonder if they stop to consider how it might feel, or how they might deal with it had it been them instead of me. And I don't mean this directly at anyone in particular so again do not think that there are lines to read between or that it's secretly aimed at anyone. It's just my own perspective at the moment, that I want to be honest about sharing as I know there are many others who deal with the difficulties of human interaction while living with a painful or debilitating disorder.

It's not easy missing out on events that you wanted to go to, with family or friends you want to see. Eventually friends drift away because, after so many cancellations no matter how old the friendship they just stop asking. That's been a hard thing to get past, not only the lose of health but the lose of friends too. Then when events are attended there's always the same polite question of, "how are you?" That's a tough question to not only answer but that I also receive a lot of criticism over.

~ElysiaB


What other people have said about answering the question "How are you" when in chronic pain:
- http://curingchronicpain.com/how-does-a-chronic-pain-sufferer-respond-to-how-are-you

Sure, it’s just a friendly formality, but what else can you say after you’ve said ‘Hello’?

Seems simple enough, but any self-respecting chronic pain sufferer who wants to appear positive, yet honest may think twice before answering that dreaded question. Would you really like to know what they are thinking?
-http://www.dcurbanmom.com/jforum/posts/list/251185.page
I know this is a silly question, but I used to be in great health and never thought about how to answer this question. In the past year, I had a car accident and have had lingering issues. Friends or co-workers ask me how are you and I honestly don't know how to answer. I hate to be a downer, but I am in constant pain and facing potential surgery. Answering "just great" seems fake to me. With close friends, I may share more, but I have a really intrusive co-worker who is always asking me details about my medical condition (made the mistake of telling her i was not so great when she kept pressing why I was out of the office for a few weeks). I always feel like I am answering inappropriately. Suggestions from people with chronic conditions?
-http://gracefulagony.wordpress.com/ 

The questions I hate most these days are ‘What are you doing? ‘, ‘So what have you been doing lately?’, and my all time fave, ‘So what is it that YOU do?’ (that one is usually asked by people I first meet in relation to what career path I’ve chosen)
What DID, DO, or WILL I?
Absolutely nothing, thanks for asking!!!
Well of course that’s not what I say…. I mean, not out loud anyhow. I usually say ‘not much’ or mumble how being a Mom keeps me busy (If they only knew my son is in Grade 5, makes his own lunch every day and is very independent outside of school.), or I try to just change the subject. ‘What are YOU doing?’ seems to be a good enough reply. People like talking about themselves generally, and are only too happy to take the focus off of me and onto themselves.


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