I know I’ve talked about this topic before. We all know I’m not going to kill myself. But I find myself many times a day thinking….no wishing….that this would just end. I’m simply so very tired. I hear myself saying it all the time….I’m so tired. I didn’t know I was fighting so hard before, but then when everything was drained from me, and I was left cold and alone with just me and my illness, I realized I had been fighting….and now I was losing.
I don’t want to die, and frankly if I did, I’m way to scared to do it myself! The thought of the pain, the morbidity, the mess, who would find me, and my poor, poor Stuart. Oh no, I couldn’t do that.
But I do want it to end. Yet, I know the best I can hope for is that it will get a bit better. It will never end…until I do. And that’s not what I want…Really it isn’t. This past month has been a complete terror to me. It has worn me down, beat me, and made me into a person I often don’t know and don’t really like any more. I never thought that my diseases might kill me until this past month. The pain, the sickness, I got so very, very tired…I just could not see going on. I could not understand how anyone could get this sick and not be dying.
I don’t believe I’ve explained all the details of my symptoms of those 25 days, I just gave the high-lights. You all know about the migraines that varied in intensity on a scale of 0-10 (see my photo scale above) between a 6 and a 10 EVERY DAY. I had constant disequilibrium, and intermittent vertigo EVERY DAY. I also started to have new symptoms. For one the vertigo was not like the vertigo I get with Meniere’s (thank goodness). Usually it was positional. If I was lucky I could find a sweet spot and find a place where if I were very still the vertigo would stop or at least slow down so slow that I could handle it, but often I was stuck in that position for hours. I have also been having symptoms with my eyes. Double vision with my left eye (always when I first wake up and when I’m very tired). I see shimmers or movements out of the corner of my eyes. I often think someone has walked by, but I’m alone., and the last one I was seeing shadows and lights that didn’t match up with the lighting in the room. I felt like a ghost was following me.
Now, I’m on the new medication, Diamox! Things are getting better…yes on some points. But the Side Effects are not fun.
Please know I have talked with my doctor about all of the following side-effects, she said most will subside, and if certain ones get worse to call her immediately. With that said, these symptoms are driving me crazy.
- tingling in the extremities.
- excessive thirst
- excessive urination
- fever (this one we are watching, right now it’s low grade)
- loss of appetite
- and all of those that I’m already having….you know….things like….
- nausea – vomiting
- this one I just love…Headache! (I know that’s incase that get it too low, but dang!)
- muscle cramps
- more bruising….well, let’s see doc, I fell down in the bathroom night before last because I was so confused from this drug, so I’ve got a lot more bruising, does that count.
Oh, my goodness, I do sound like a sourpuss don’t I? But sometimes don’t you just feel like the cure is almost as bad as the illness.
And can you tell me why…all you very wise people out there…why is it bothering me so very much that I can’t get out and go anywhere or do anything that I want when I want? I’ve barely driven in 3 years, but NOW I’m pissed because I can’t go somewhere when I want, and I’ll probably get sick before we get there and will have to come straignt home. But oh…it just bites my butt.
And I’m very grateful that Chris and Penelope have been here, he’s been wonderful at cooking dinner, but even though I don’t feel like cooking..I’m beginning to feel funny about him being in my kitchen all the time. I think I’m afraid he’s a better cook than I am and I’m jealous. But I’m also jealous because, I want to be in my kitchen making new things, creating new dishes with the new spices I just bought. Oh…so sad. I miss my kitchen.
Please forgive this, but I’m having a hard time with Penelope’s complications. They have found out she has pregnancy induced Intercranial Hypertention…Yeah, High CSF! What are the odds. So I have to hear all about it. But in 2 weeks when the baby is due, her’s will most likely be gone. Very rarely does it not go away when the baby is born. So I think I’m a bit jealous of that. She gets cured and gets a baby at the same time.
My lord, I’m pitiful. I’m jealous over the stupidest stuff. But really I’m very glad they could stay here and be comfortable here. I’ve baredly seen them. They seem to be doing fine. Penelope stays lying in a dark room a lot. I find sitting up much more beneficial to me when I have a high CSF headache, but to each his own I guess. From what she’s told me about the guys who’ve given her LP’s I have not been impressed.
We dropped by Target on the way home today and I bought something that cost $1.07, I gave the woman $!.12. She just hit the total button and put in the money and then had no idea how much I gave her or how much she should give me back. You could see this complete blank look on her face as she looked at the receipt. I said, “the change should be 5 cents, I gave you a dime and 2 pennies.” No you just gave me a dime….oh, I was already ticked off that I had to beg to drop by Target on the way home, or normally I would have said, why don’t you just keep the change. But no, not today. “NO, I gave you 12 CENTS, you owe me 5 CENTS, and I don’t want pennies.) She slammed the 3 pennies she tried to give me in the drawer and gave me my nickle. and I didn’t feel bad about it at all , until just now. And still I don’t really. People do not take pride in their jobes any longer. I used to cashier. I was never more than 5 cents off….over years and years at different places. People need to take pride, no you may not be getting more than minimum wage, but neither was I. However, I still did the best job I could. Is that so wrong? I had a job managaging an art gallery, and worked part time at a little store making minimum wage, I worked just as hard at both. When you are interviewed and you are asked if you are willing and would like to do this job and you say yes….then you do it!
So, this post has gone from me wanting to give up….I’ll talk more about that later. I’m not giving up…but I am changing those expectations!!
To having a good work ethic, and I haven’t worked in 8 years.