Misery Loves Doesn’t Love Company
I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.
I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be “normal” for a little while so badly that I didn’t care that it would cause a fight. He won’t let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.
I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.
But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist’s couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I’m taking a med to stop some of the very things it will give me – doesn’t make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can’t control the left side of my face, but it’s actually quite the opposite, the muscles on the left pull it that way.
I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I’m crying at almost everything right now, and can’t stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of “his” kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn’t take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.
I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don’t think I can deal with it right now. Somehow I just have to make it through until next Wednesday.
I’ve completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I’m trying very hard to stay busy and focused on something besides me, but it ain’t workin’!!
Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It’s real, and I’m not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!
Sounds as if you have worked off some of the adrenaline this highly charged time has given you.
You’re so much closer to finding out today than you were a few months ago, DB.
Whatever the outcome is, I imagine it will be a huge relief. I continue to send Reiki blessings and prayer your way.
And I’m glad you let off steam on your blog…about time.
It goes against my nature normally, Marion, to vent out loud like that. But I suppose you are right – it was about time.
I appreciate your blessings and prayers and yes, finding out anything is going to be better than this black void I am in right now.
Thanks for stopping by, Caleb. When people ask me how I’m doing I just say OK and keep going. I know someone at church who takes such a question as permission to spend the next 30 minutes giving a detailed list of present and past aches, pains and diseases. So, people avoid her, and I admit I dread asking her how she’s doing, but I do ask, and I do listen. But I made a conscious decision not to be like her, and now I’m not so sure that was a good decision.
I’m in a position to see how much she needs to be seen as she really is, not as the fake OK person. I’m pretty miserable at church myself right now, because friends who know me quite well are content with the OK answer. They should care about me enough to open their eyes and see that I am lying through my teeth. So, it just adds to my depression.
Being real is part of having Parkinson’s, at least that’s what I believe. If every person with Parkinson’s disease ran around saying everything was rosy then they would be lying. Opposition and trials are very important for our personal growth, as we find strength during the hard times in life we learn to appreciate the more important things in life. There’s a lot to this and I think I may have to take some time to ponder the importance of being real during the trials of our lives. Thanks for being real.
I love that quote, Caleb!! If you think something here is worth using on your blog, go for it! I would appreciate the link back, too.
By the way, for some reason I can’t get the blog link of your name on our comment to send me to your blog.
Hi Rosemary,
I haven’t stopped by your blog in a long time. Just wanted to let you know I’m thinking of you.
hi rosemary,
haven’t been keeping up with your blog so i have missed it if you have mentioned whether you are on levodopa, but it sounds from your post like you might be – sounds to me like some of what you are experiencing is dyskinesia (which you no doubt know, if you are taking l-dopa) and also oro-facial dyskinesia. i’m no doctor, but given that you can’t have been taking it for more than two years, i am wondering how much you are taking, and also whether you have tried reducing your dose (under your doctor’s supervision, of course). it wouldn’t surprise me if you have tried that already but just thought i’d throw it out there.
also, i know exactly what you are talking about with folks who are all too eager to buy the charade that you are ok. once, when i was in the midst of major depression, i was at a party (this was in the five minutes between arrival and departure – those people lived in a very different world from mine – they could smile, and laugh, even – but i digress) and this acquaintance said hi, how are you, and i asked him whether he wanted the truth or a lie. a lie, he responded. i’m fine, i said, as i ran for the door fighting back a typhoon of tears.
i had – and still have, though I see them somewhat differently now – friends who attacked me for being depressed – I wasn’t trying hard enough, it was my own fault (pay no mind to the degenerative disease and the parent looking like she was losing her battle with cancer (she wasn’t, thank god)), did I think I was the only one with problems?
some people just can’t handle what we are experiencing, and the reasons probably vary.
But it is a blessing, maybe a small one, but a blessing nonetheless, that we do have a whole community of people who have a clue, people who *mean* it when they ask how you are, and people who will listen when the answer is not “fine.”
Sounds like you are in a pretty dark place and I wish I could do more than tell you I am thinking of you and rooting for you. Let me know if you think of anything!
anuket
I understand the thing that you mentioned about friends. I’ve never realized how important friends are until I just recently experienced some hard things in my life. A friend that truly listens is pretty amazing. I don’t know if you’ve heard this quote before, but it’s one of my favorites:
“A friend is one to whom you can pour out the contents of your heart, chaff and grain alike. Knowing that the gentlest of hands will take and sift it, keep what is worth keeping, and with a breath of kindness, blow the rest away.” -Anonymous
I liked your post so much that I will be writing a little about it in my own blog, I hope that’s okay, I’ll probably reference your blog if that’s okay?
Good to work off steam but please don’t overdo it 🙂
I must be really dozy these days as only recently realized that Cybercelt has taken over Blog Village from you. She is my team leader in TrafficEra so I should have noticed LOL
Saw Michael Fox on Rachael Ray this week (we run a few months behind the US) and pleased to see how well he is managing and how good he looks. Had wondered how he was as he was a real favorite of mine both on TV and in the movies.
I’ve not been visiting blogs the way I should, either, mozartmovement, so you certainly don’t have to apologize to me.
Glad to hear from you, and I’ll try to get by your blog soon.
Hi anuket. Yes, just being validated by your own experiences helps. That was the main reason I started this blog. At that time I could not find many blogs that told the real story of what it’s like to have a disease like this. Of course right now I don’t even know what disease it is I have, if any!
To catch you up- I have been off of all PD meds now since Jan. 25. I am currently on Clonazepam to calm the tics and jerks. When I am doped up from the Clonazepam, my face, shoulder, and leg stay pretty still, as long as I am not stressed. But the woozy feeling is very unpleasant, and even that won’t stop the body and face dance when I am out and about.
I do pretty well here at home, while I am concentrating on the computer, but not so well trying to work in the yard or do anything that doesn’t occupy my mind so completely, like watching TV.
Hi Jackie! I stopped by your blog just yesterday and saw the post about coconuts. That brings back memories of Mama’s coconut cake. The monkey face on the coconut always fascinated me as a child.
CC was nice enough to take over the Village, as I was having a hard time juggling everything, and my stress level was going over the top.