Most days I did not have the ability to do what everyone semi-healthy or healthy takes for granted in their daily life. Prior to stating this latest medication, I at least was able to be awake and enjoy reading people posts, be it on FB or Twitter. Throwing in my two cents for what it was worth here and there. Reading a good book or watching the occasional show I enjoyed. All of that in the span of starting this new medication made even that impossible within the first two days. I was unable to stay semi-conscious for any length of time. But at least I can control that part at least by going off this medication.
I too have not shared but am now letting you know I suffer from short term memory loss or as those with Fibro call it "brain fog" which has made my house full of sticky notes and calendar reminders all over! Many times I have the thought to call. message or email someone and then forget, it's nothing personal. That is just my reality, and I am trying really hard so don't think I am shutting you out. (I had a friend who thought I was ignoring them which rather than assume please ask I won't take offence. You should remember that I was not like that before, so why now that I am sick that thought process has crept into your mind?) I know I have changed but not my care and compassion for my friends and family. If you feel it has please let me know so we can work it out.
I also suffer from very jumbled thoughts. What I write is not as clear as it once was more then likely the medications and is part of this condition, I think. I have read many people asking those of us in our support groups the same questions over and over so I know I am not alone. Too bad no money is made in really studying this condition, someone could put two and two together.
Which brings me to the topic of isolation and solitude. Last month I had my flurry of visitors...friends that I had not seen in a while. It seemed at least for a few weeks we were having non-stop visits which now again have ceased. Which is okay it's a pattern which only those who are chronically ill and especially those that are mostly house-bound know and can understand all too well. I say mostly because I am one of the lucky ones who still has some good days up until three weeks ago was able to get out occasionally on my own. I would not dare at this time until my sleepiness and nodding off without warning has diminished.
See I/we can no longer participate in activities which in our or at least in my case have to weigh the pros and cons of doing so. My healthy friends and family I am sure you think I am ignoring you which is the farthest thing I am doing. But how do you participate in a world from which you no longer have much in common with? It's finding that fine balance which unfortunately until you are forced into the situation cannot fully understand. I struggle with this balance every day.
I would do anything to wake up tomorrow and call someone and say hey let's go out but I don't have the luxury of being able to do so. I no longer know what is happening in your life. Nor can I predict from one minute to the next how my body is going to react, so staying home is safer for me. But that does not mean I never want to hear from you. Or be invited somewhere. I leave you alone waiting for the phone to ring or for you to show up at our door, because I honestly don't know if you are busy, I have been away from your world too long to know.
Which brings me to the topic of isolation and solitude. Last month I had my flurry of visitors...friends that I had not seen in a while. It seemed at least for a few weeks we were having non-stop visits which now again have ceased. Which is okay it's a pattern which only those who are chronically ill and especially those that are mostly house-bound know and can understand all too well. I say mostly because I am one of the lucky ones who still has some good days up until three weeks ago was able to get out occasionally on my own. I would not dare at this time until my sleepiness and nodding off without warning has diminished.
See I/we can no longer participate in activities which in our or at least in my case have to weigh the pros and cons of doing so. My healthy friends and family I am sure you think I am ignoring you which is the farthest thing I am doing. But how do you participate in a world from which you no longer have much in common with? It's finding that fine balance which unfortunately until you are forced into the situation cannot fully understand. I struggle with this balance every day.
I would do anything to wake up tomorrow and call someone and say hey let's go out but I don't have the luxury of being able to do so. I no longer know what is happening in your life. Nor can I predict from one minute to the next how my body is going to react, so staying home is safer for me. But that does not mean I never want to hear from you. Or be invited somewhere. I leave you alone waiting for the phone to ring or for you to show up at our door, because I honestly don't know if you are busy, I have been away from your world too long to know.
And in turn I have had friends say call me and let me know when is a good time to visit you. In all honesty I can't predict when that will be, but one thing I can say is show up I am use to being in pain and would still love your company. (I have become a master at masking the pain I am in, you would think nothing was wrong, unless my lovely muscles decide to put a show on for you. The one thing I have no control over but once over at least you can witness an incredible feat I do for kicks! Just ask any medical profession I've seen they will gladly tell you I have the power to put myself through the pain of having my muscles twist on their own! Too bad side shows were no longer popular I would have a job again!)
I had a call with a friend not long ago who was starting to tell me of her troubles with a co-worker and stopped in mid-sentence and said "oh, this is so trivial compared to what you are going through". But what a healthy person fails to realize is we need or seek the mundane to remain part of the world.
Remember we are still here and although you may not be comfortable remember those of us who suffer from chronic illness are still trying to finding our comfort zone too. Embrace us and let us still feel like we are still a part of the mundane world.
We all know the saying laugh and the world laughs with you...Weep and you weep alone...well for those that don't know here is the rest of that poem. Both healthy and the sick should take note and help each other to the best of our ability, until we all have to take that final journey alone.
Solitude
BY ELLA WHEELER WILCOX
Laugh, and the world laughs with you;
Weep, and you weep alone;
For the sad old earth must borrow its mirth,
But has trouble enough of its own.
Sing, and the hills will answer;
Sigh, it is lost on the air;
The echoes bound to a joyful sound,
But shrink from voicing care.
Rejoice, and men will seek you;
Grieve, and they turn and go;
They want full measure of all your pleasure,
But they do not need your woe.
Be glad, and your friends are many;
Be sad, and you lose them all,—
There are none to decline your nectar wine,
But alone you must drink life’s gall.
Feast, and your halls are crowded;
Fast, and the world goes by.
Succeed and give, and it helps you live,
But no man can help you die.
There is room in the halls of pleasure
For a large and lordly train,
But one by one we must all file on
Through the narrow aisles of pain.
I had a call with a friend not long ago who was starting to tell me of her troubles with a co-worker and stopped in mid-sentence and said "oh, this is so trivial compared to what you are going through". But what a healthy person fails to realize is we need or seek the mundane to remain part of the world.
Just like I/we don't want to always bore you with my/our health but when you shut down the conversation it actually makes us feel worse or at least that is how I feel. Because it is one more reminder that I/we are not part of that world anymore. For a moment put yourself in that place of someone shutting you out. I'm sure it has happened to you before and the feeling was not a good one. I/we face that on a regular bases. Don't forget that we are still humans and need contact. Talking to you what is trivial and mundane gives us reason to feel like a part of the world that we to use to take for granted. Please don't shut us out; talk to us as you use to I guess is all I am trying to get across. We/I have mastered the art and have learned even though I/we are in pain we still want to know how you are too.
My illness should never make you feel like I care less about you or what is going on in your life. It matters to me because you mean that much to me.
My illness should never make you feel like I care less about you or what is going on in your life. It matters to me because you mean that much to me.
We all know the saying laugh and the world laughs with you...Weep and you weep alone...well for those that don't know here is the rest of that poem. Both healthy and the sick should take note and help each other to the best of our ability, until we all have to take that final journey alone.
Solitude
BY ELLA WHEELER WILCOX
Laugh, and the world laughs with you;
Weep, and you weep alone;
For the sad old earth must borrow its mirth,
But has trouble enough of its own.
Sing, and the hills will answer;
Sigh, it is lost on the air;
The echoes bound to a joyful sound,
But shrink from voicing care.
Rejoice, and men will seek you;
Grieve, and they turn and go;
They want full measure of all your pleasure,
But they do not need your woe.
Be glad, and your friends are many;
Be sad, and you lose them all,—
There are none to decline your nectar wine,
But alone you must drink life’s gall.
Feast, and your halls are crowded;
Fast, and the world goes by.
Succeed and give, and it helps you live,
But no man can help you die.
There is room in the halls of pleasure
For a large and lordly train,
But one by one we must all file on
Through the narrow aisles of pain.
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