I'm afraid today. Just woke up afraid. It's not the normal kind of fearfullness. I am not afraid of my surrounding or of something getting me. I am not scared of a person or place. I'm terrified of Lupus. I hate it. I hate going to bed wondering if I am going to wake up in pain. Or if I am going to have anothing episode of confusion. I hate the dubiosity that Lupus holds over my life.
I do the right things. I take the right meds. I don't overdo it. Yet the pain still comes. Yet the confusion still has control over my brain. Yet I still twich and quiver. Every day of confusion I lose something and I don't get it back.
I remember my Grandma. The last time I saw her. Whether it was just Dementia or the cancer that had spread to her brain. She was very confused. She didn't remember me. Did it start this way? Did she get small periods of confusion? Did she forget how to do things? Why things were done?
I get comments from people. They tell me. Yeah, I forget things all the time. It's just getting older. Getting older, I'm only 47, give me a break. Those comments really piss me off.
Because I'm not just forgetting where my keys are. Or forgetting why I went into a room to do something. I'm forgetting why I went into the car in the first place. I'm not even allowed to drive at all. I've been lost in the supermarket. Not just wondering what I need to buy. Lost as in WANDERING AROUND! Breaking out in a sweat and confused.
I was there on Friday evening with my husband and it happened. If he wasn't with me I would have been a goner. Does anyone understand how disturbing this is for me? I wish it was just forgetting where my keys were.
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7 comments:
i hate lupus for you too. Luanne, I still pray for you in Jesus' Name for peace and comfort today. I pray He hold you in His arms and you feel His strength and love for you, one of His children.
much love, sara
(((((Lu))))
It has got to be really frustrating to try to tell someone what you are dealing with and then they say the wrong thing, thinking that they are being a comfort...or worse... they are not really listening to you. What you are going through is really scary, and you need people to accept that.
Lu, it is okay to worry about this. You are having a sane reaction to a very upsetting season in your life.
When you start to panic, dear friend, please remember this...you only need to live this life one moment at a time. If the panic is really bad...live one breath at a time. You can get through one moment easily...just a little at a time. I'm walking with you today, Lu in spirit and in prayer.
With all of my love,
Loretta
(((Lu))) I am trying very hard to understand, Lu, and I hope you know that I pray for you daily. I have not experienced confusion as severely as you have, although I have had memory loss and confusion. I will ask my daughter six or seven times when she is leaving for work or coming home. I have been driving and forgotten where I was driving to. I have forgotten which one is the gas petal and which one is the break petal. Or if green means go or stop. I also had to ask my kids how old they were and when their birthdays were after I had electric shock treatment. That was pretty scary. But no, I do not claim to understand to be this way for extended periods of time, but I do know how it feels to be confused. I don't know if I told you that I had a "swollen brain". That is what my illness does. I am lucky that my illness is not progressive. It is stabilized. I thank God for that every day. You are in my heart and in my prayers and I want you to know that Jesus is holding your hand and knows everything you go through!! Love you, dear! xox
((((((((((((Lu)))))))))))) I am so sorry, sweetie. I wish I could fix this for you. I hate lupus too. I hate that it takes our lives from us and does horrible things to our bodies and minds. Loretta gave you some great advice and I agree with her completely. One day at a time, one moment at a time, one breath at a time if need be. Hang in there!
Love you,
Susan
Dear Lu
Please don't be afraid. LUPUS where did it come from and where will it take us I don't no. I make list to go to the store with and I forget the list. I go back to the same store 3 or 4 times and still come home without what I went for. Sometimes I want to scream. I only park in handicap because most of the time I can't find my car. I forget my money I must go home to get it. All small things but so fustrating.
Your beautiful inside Lu I can tell by your writings. I look foward to read your journal everyday. You are in my prayers. Stay strong God is with you.
Love Eileen
Luanne, I have been reading your journal for quite some time, and while I do not have Lupus, my heart breaks for what you must be going through. I don't blame you for being angry at people's comments about your forgetfulness. Even I can see that it's not JUST being forgetful, but being confused. They have no idea what you must be going through. I, myself, can only imagine, and empathize with you. I would be terrified too. I can't imagine waking up everyday and wondering just what was going to hurt, and what kind of confusion I might have to put up with today. I read several journals of people that are suffering from this dreadful disease, and I have come to learn so much more about it. You seem to suffer with much more severe symptoms than most of the journalers that I read. My thoughts and prayers are with you, Luanne. Please try and keep that remarkable faith of yours going. You have shown so much of that in your writings.
Be strong, sweet one.
{{{{hugs}}}}
Jana
Miss LuAnne..... I can say that yes I understand you. Yes it is different than simple forgettfulness.....it is utter helplessness. At times hopelessness.....it is the meaning of despair. I hate it when I am tired and other people think they know what that is like. Unless they have an illness that causes fatigue they really don't know. Taking care of myself, getting more nutrition or more sleep won't cure the things I am suffering from. MS causes memory problems and sometimes I can not seem to remember what or why I am doing whatever. At times I struggle with my name. MY NAME. Good Lord I have had the same first name forever so I ought to know it. MS causes "tip of my tongue" disorder and it sounds like Lupus does too. There are times when I stand somewhere and wonder why on earth I am even standing....I honestly don't know why. And it scares me.
I get you LuAnne. I do.
Chronic illness feels like being stalked relentlessly...endlessly.
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