Like I said, I have had a really nasty couple weeks which have really tested my composure and my spirit.
I told my friend last week, "I'm going to cry a lot between now and the end of the summer, just so you're prepared for it." Of course, the odds of me crying in front of my friends are pretty slim; I've had a few chokey moments lately especially when talking about my eyes, but by large, I've kept the emotional meltdowns fairly private. I find it much harder for me to manage my life when I have to do it in front of people.
I seem to save all my reactions for the medical personnel. I was pretty even-keeled when this all started, but I just don't have the energy or emotional fortitude to keep it up lately.
Yesterday's fun was hearing about how I have a (now confirmed) kidney infection. Why this prompts me to cry in my car before I drive home, I don't know. I suppose there's just something about having to pee in a cup everyday for the next 4 days.
For the past year or so, the vision in my right eye has really deteriorated and I have trouble keeping my right eye from shaking. I saw another specialist last week who had me do a number of tests, some being quite uncomfortable. Apparently there's not much they can do, other then to continue some very expensive vitamins.
My five year old niece said to me a few days ago, "Auntie, when you go blind, I promise to take care of you. It doesn't matter to me whether you can see. I'll explain all my pictures to you so it's like you can see." Well, I started to cry. Who wouldn't? I love her so much.
If you can't handle me at my worst, then you sure as hell don't deserve me at my best.
Tuesday, May 17, 2011
Tuesday, May 10, 2011
All I Want is Sleeeeeeep!
Not surprisingly, I didn't sleep much last night. My right leg was KILLING me, burning and tingling all night. The only relief: Standing. Well, I can't stand all night, ya know! I was exhausted. I fell asleep momentarily leaning against the wall, sometime around 4am. Between the pain in my leg and the nausea, popping a few Gravol didn't seem like a bad idea. About 30 minutes later, I didn't care about the pain. Because I was (finally!) out cold. Merci Dieu.
Monday, May 9, 2011
All That and More
I wonder if MS has completed the process of completely isolating me from any sort of relationship. I don't really know how to talk about it. When would I bring it up? If they like me it won't matter, right? Well it matters to me. It matters that I feel more damaged now then I did before. It was difficult enough before to attract any interest. Now I'm not only under-educated, early-20's, somewhat difficult woman, I'm all of that with MS as well.
Nap time!
Nap time!
Sunday, May 8, 2011
"I am Angry"
You know what? While I'm at it...
I am angry.
I know all of it - I know there are people out there who have it worse then me. I know that being angry doesn't help me get better. I know that it's not healthy to wallow in negativity.
I also know that I don't care about any of that right now. Multiple sclerosis has stolen something from me, many things, actually. I am angry about these things that I have lost (like, feeling good and thinking clearly).
I'm not blaming anyone for this, although this might be easier (any takers?). I am really sorry if I lash out at you (sorry mum!) or turn away from you (sorry sisters!). I will come back. I need patience more than anything, and maybe a little space to finish this round of the fight.
I am angry.
I know all of it - I know there are people out there who have it worse then me. I know that being angry doesn't help me get better. I know that it's not healthy to wallow in negativity.
I also know that I don't care about any of that right now. Multiple sclerosis has stolen something from me, many things, actually. I am angry about these things that I have lost (like, feeling good and thinking clearly).
I'm not blaming anyone for this, although this might be easier (any takers?). I am really sorry if I lash out at you (sorry mum!) or turn away from you (sorry sisters!). I will come back. I need patience more than anything, and maybe a little space to finish this round of the fight.
"I am Tired"
I have had a particularly terrible week.
I am not feeling thankful right now. I do not feel like counting my blessings. I don't feel grateful. And if you try and point out any of those things, in my mental state, I am much more likely to punch you in the face than nod along in agreement.
My MS has taken me on a roller coaster ride lately. I've been caught off guard by symptoms and if I was to tell people about my MS that very second, they would think that I was completely unable to cope. But there are moments where I am truly feeling okay (comparatively) and when I talk about my MS at those times, it comes across as really no big deal, which is also far from accurate.
It takes a huge bite out of my confidence when I am unable to express myself in a way that makes me proud of myself. I have a really hard time communicating what is happening to me, especially if I am having a bad day. Like today. And yesterday.
"I am tired"
Saying the words "I am tired" isn't really accurate. That is because the words to describe exactly how I feel don't seem to exist. I could use all the metaphors to relate it to something you might have felt in the past (jet lag with a huge hang over), but really, they fall short. Attempts to put words together might come across to you as overly dramatic or exaggerated - And knowing that you thought that would only make me feel worse.
Let's put it like this: When I feel this way I am unable to think clearly. I am dizzy. I am nauseated. I cannot fake my way through this type of exhaustion.
I am telling you this because I want you to know about this aspect of multiple sclerosis, which, unfortunately is also a part of me. This will not last forever. I will have times when I feel normal again. I will be more functional. Until then, I need some acceptance. I know this is also frustrating for you. I have not forgotten about you.
I am not feeling thankful right now. I do not feel like counting my blessings. I don't feel grateful. And if you try and point out any of those things, in my mental state, I am much more likely to punch you in the face than nod along in agreement.
My MS has taken me on a roller coaster ride lately. I've been caught off guard by symptoms and if I was to tell people about my MS that very second, they would think that I was completely unable to cope. But there are moments where I am truly feeling okay (comparatively) and when I talk about my MS at those times, it comes across as really no big deal, which is also far from accurate.
It takes a huge bite out of my confidence when I am unable to express myself in a way that makes me proud of myself. I have a really hard time communicating what is happening to me, especially if I am having a bad day. Like today. And yesterday.
"I am tired"
Saying the words "I am tired" isn't really accurate. That is because the words to describe exactly how I feel don't seem to exist. I could use all the metaphors to relate it to something you might have felt in the past (jet lag with a huge hang over), but really, they fall short. Attempts to put words together might come across to you as overly dramatic or exaggerated - And knowing that you thought that would only make me feel worse.
Let's put it like this: When I feel this way I am unable to think clearly. I am dizzy. I am nauseated. I cannot fake my way through this type of exhaustion.
I am telling you this because I want you to know about this aspect of multiple sclerosis, which, unfortunately is also a part of me. This will not last forever. I will have times when I feel normal again. I will be more functional. Until then, I need some acceptance. I know this is also frustrating for you. I have not forgotten about you.
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