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.
- drowsiness
- excessive thirst
- excessive urination
- fever (this one we are watching, right now it’s low grade)
- confusion
- loss of appetite
- and all of those that I’m already having….you know….things like….
- dizziness,
- 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.
Ironic huh?
Picnic with Ants 
We aren’t both supposed to be here at the same time! Questioning our diagnoses, feeling awful, CSF pressure issues. UGH!! Diamox may be in my future too. I hate this. Know that you have my empathy…even when I’m not feeling well enough to give a proper reply. Hugs.
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this is a proper reply you silly goose, you could have just said…. Exactly. nuf said. we’ll get there. some how we’ll get there. one day at a time. hugs wendy
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Wendy, As always I just get so upset when I read your posts. I have been at that same place, where you just can’t take it anymore. I once told my sister (years ago) that I just couldn’t DO THIS anymore, and I scared her to death. She thought I was going to swallow a bottle of pills or something. It is so tough to be so sick!
I went out with my SIS today and tried to find a CD at the store. I stood there looking at the CD’s and I got so totally confused, I had to ask the kid working there for help. He looked at me like I was nuts. Then we went to the dollar store and I got so weak and air-headed that I had to go sit in the car.
Illness is a big pain in the ass….but we are getting through it Wendy, and it is better than the alternative…I think!
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Oh no…I don’t like to hear my posts always make you so upset…this will have to change. come on….the food post that was kind of funny…I know you laughed a little..
I’ll try to do better. I’m doing better. as I told someone else. Still feel like my brain is in a jar filled with fluid and it’s sloshing around a bit. I told someone yesterday I felt flooshy. I don’t really know what that means, but it sounded pretty good.
I’ll post a funny today. if I have the time, if not tomorrow. love and hugs. it will be better. wendy
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Boo, hoo! No, you don’t want to give up, you just want relief. (P.S. I stole that line from someone else, but I like it so I’m going to spread it around!)
When a cashier can raise your ire over a nickel, you know you still got it in you. I used to get grief from the same cashier at Target when I brought in my own cloth bags just before they started selling their own. She seriously huffed and puffed and rolled her eyes every time I handed her my bags, just like a bratty little kid. So annoying.
In the meantime, you have every reason to feel what you’re feeling. Have you said any of this to Dr. Gray or Dr. Kaylie? Just wondering…
Hugs, dear friend.
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Yes, on Friday, I finally screamed so Dr. Gray heard me while Stuart was talking on the phone with her…and I was crying and said, “Please, won’t someone HELP me?” It’s getting better.
OH….I didn’t like the Boo! Hoo!….that made me feel like….oh poor little you. are you feeling sorry for yourself…like I don’t deserve a little self pity now and then. Well hell yeah I am! And I just saw my therapist yesterday and she said I have every right. Is amazed I don’t do it more often….but she knows that’s the way to make me go…to hell with this! I’m not one of those bloody whinny little bastards. and yes I do like ” No, you don’t want to give up, you just want relief. ” I’ve said something similar. I don’t want to die, I just don’t want to live like this.” not quite the same…but really I meant it about the same.
but did you catch the little bit at near the end. ” I’m not giving up…but I am changing those expectations!!” I should have said more about that but I was just too exhausted. I’m OK. just so tired, confused, and did I mention tired.
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No!!! I wasn’t boo hooing like “that”. I was boo hooing like I was crying along with you!!! Yes! Yes! I know you still have a positive attitude underneath it all. So, so sorry for the misunderstanding.
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Angelea, I’m sorry…sensitive woman here. I once said something on Facebook that was just a matter of fact…nothing else….about…I wonder, if Stuart was not in town and I died in the house how long it would take for someone to find me. (yes i worded it a bit better than that.) OK…if I was feeling horrible and lonely…why would someone say….”my, my, aren’t we having the pity party?” and this was from a person who I thought was very loving and kind and understanding about loneliness. It was a shock. I came back with …. actually NO I’m not feeling sorry for my self, or lonely even. Just an observation. Ever since then, I’m hesitant to say when I’m feeling vulnerable, and I’m touchy.
I’m sorry, you got hit with the crap from a past explosion.
no hard feelings? I couldn’t imagine you meant it as I read it and should have written you, not commented…but brain not working just right at this moment.
love to you my dear wendy
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Totally understood! Don’t waste a minute thinking about it. Of course no hard feelings. With all the emotions and brain sloshing around, etc. Well, I get it. Just keep plugging along one minute at a time and you’ll make it just fine. Hugs, hugs, hugs!
Angelea
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Oh Wendy. I feel so much for you – I can’t truly imagine what you are going though… well, I guess I can imagine it but I don’t want to because it seems so horrible!!
I honestly think that you sound totally normal – even your thoughts of just wanting things to end etc. It’s a weird balance between what it must be like to actually be suicidal, and having those thoughts cross you mind as you lie in pain and fear that is seemingly endless. I know that they have crossed my mind too, and I have not suffered with my illness as much as you, but in those desperate moments feeling helpless and hopeless it makes sense that we think those types of things. It feels like the only route to escape.
IT does sounds like you have a pretty good handle on things – everything considered. You manage to find a bit of light and strength no matter what (even just to say or type ‘I’m ok’ is huge). You are stringer than I think you even know : )
I honestly have not read some of your entries lately (or posted on my own blog), because I have been feeling good and not had a spell in quite some time. Sometimes I think that if I don’t think about it, I’ll be fine. Ignorance is bliss? I know that it won’t go away if I ignore it, but that seems to be working okay for me at the moment. I have started a new job that I really enjoy, and have been trying to take care of myself. I have a dr apt with a new specialist in a few weeks, so we will see how that goes. When I made the appointment, I was getting sick so frequently I was desperate and feeling horrible. That was in November, and waiting until March for and apt seemed impossible. Now it is just a few weeks away, and the memory of how horrible I was feeling has faded. I made this appointment to take the next step towards well, my next step, which will be surgery of some kind. Now I feel that I do not need it. I expect I will get bad again, it’s only a matter of when, but again, trying not to think about that. Sigh.
Good luck Wendy – my thoughts are always with you, even if I am trying to ignore my own MD!!
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I don’t get the sense that you have given up, just that you wish it would end. Totally understandable. I’m nowhere near as sick as you with this stupid disease but I get where you’re coming from. On the days when I’m so tired after 10 hours of sleep or I feel so bad I want to curl into a ball and die (not literally, you understand) because my meds aren’t working, I wish it would all end. But I mean, same as you, that the disease would stop messing up my life, not that my life was over. Anyway, I hope it gets better for you very soon. I hope that in the next few weeks I start to read posts about how you are doing better. Thanks for sharing.
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I am so behind reading posts. I hope you are finally feeling better. I will find out as I read and catch up.
I don’t have the same ailments as you do and mine aren’t as severe, but the pain is unrelenting. I have the occasional day where I am so sick of the pain and exhaustion never ending…the years and years of it…that I can just cry. I can totally relate to the feeling of wishing it would just end. I’m not suicidal, either. 😉
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