I Just Can't Right Now

We have words to explain every shade of grey. We have words to explain just about anything and everything.
That is, until I am really desperate to get my point across because I am under physical or emotional distress caused by one symptom or another - at the time that I need to explain things accurately, in a way that people will understand and react with empathy, my words seem to completely abandon me. I'm always telling my nieces to "use their words", yet I easily find myself flapping my hands around when trying to explain a particular emotion to my mum or a friend, with the only words at my disposal being "Fix it." or "Go. A. Way. Now."


I Just Can't Right Now

I find myself having to say no to a lot of people lately. There are numerous things (too many to mention) that I would love to do but just can't handle right now. I want to. I really do. I know it would be good for me to get out of the house and be with people and have fun. I want to be like a "normal" person and make plans and keep them. I want little outings to be fun and not fill me with dread. I want to be the person who says "Come on! What are you waiting for?!" as I beat you out the door.
But I just can't sometimes. I'm sorry. Maybe next time. Ask me again, please.

Go Figure

I would like to think that I do not let my MS define me as a person. However, I have noticed something interesting - the relationships in which my MS is acknowledged are the healthiest and most nurturing relationships that I have. These are the spaces that I can be tired if I want, shaky if I happen to be shaky, or confused and slow - and it is okay. You know what else I noticed? That when I have that space to be tired, shaky and confused (and allllllll other sorts of gimpy), that I am less tired, shaky and confused than when I am trying to hide my symptoms or pretend that they really don't matter and that I am the same person that I have always been. Go figure.

Peeing in a Cup

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.

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.

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!

"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 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.