Monday, December 28, 2009

Provisions Please

Today I was cranky and anti-social despite feeling pretty well. I genuinely feel badly for not embracing a good day.

I don't know how to get rid of this guilt. I know I am entitled to be cranky and anti-social for any reason, just like anyone else, but I still feel like I should just feel lucky and happy. What if I have a bad day tomorrow? Will I wish that I had been more active and happier when I had the opportunity? I think about the near future way too much. I always feel obligated to make decisions based on what I think I WILL want or how I think I WILL feel. Maybe this is because I don't really like my present life and I'm constantly thinking about how I can improve it or what has to happen before I can live in the present again.

The future does indeed look promising! I start my college certificate program in January. I am so excited to feel productive again! I'm more excited about that and using my fancy new business bag I got for Christmas and dressing up for school than I am about the work itself! I think this is because I really just want to have a life again. Once I'm in school I won't be bored and lonely anymore! It will also be lovely to write assignments again... but I'm not looking forward to group work so much! I'm dreading the thought of others not pulling their weight or worse: me becoming ill or not being able to handle my share of the work.

I am concerned about how I will handle full-time school every day with homework on top of that, so I think I might give up being brave and get doctors notes if I have to. I'll also seek advice from the disabilities program I registered with at my school. Surely there are provisions available at the school to people with health, learning and mobility issues like mine! Wow. Imagine that! Me ASKING for provisions, after my entries in here complaining about them. I think I won't mind asking, though. At least now that I'm older I understand what my issues are and I'm less afraid to ask to be treated differently. Now I understand that people can really can help me.

At my appointment to register with the disabilities program at my school, the consultant told me that I could get a vocational assessment to evaluate my auditory processing difficulties with instructions, so I'll get that too and figure out what I can do about my worsened short term memory and weak, aching legs and balance problems. (I asked my mom for one of those pill boxes with compartments for each day of the week because after I use the toilet or brush my teeth I often can't remember if I've taken a pill yet) School would be a great opportunity to finally address these issues, especially since I've now accepted that I have indeed been symptomatic because of the Dandy Walker Variant.

It still doesn't make sense to me why I became so symptomatic after I got sick in June, but I will go back to my neurologist to ask him. I will also ask him for referrals for physical and occupational therapy and more tests for my legs. I just had my head MRI today, so maybe that will offer some information.


  1. "Imagine that! Me ASKING for provisions, after my entries in here complaining about them."

    I think, based on what you've wrote, that there is a difference: when you were younger, you were GIVEN provisions without your consent, or even without your knowledge and without any explanation. At least now.. if you're ASKING for them... that's sort of giving you the control instead of taking your control and whatnot away. :)

  2. Asking for things you need is always a big hurdle to get over! Well done, you!

  3. Oh man, you're exactly right! I have control and knowledge now, not only about my conditions and their effect on me, but about HOW the provisions can help me and why they may be necessary. Not only that, but doctors and other people haven't even recommended these provisions. I came up with the idea all by myself.

    Now that I'm older and wiser, I know myself well enough to know that I need help and brave enough to ask for it. I no longer feel like asking for help makes me a weak person, that others will ridicule me for seeking help or that I should avoid doing things that will make my disability visible.

    Being so vocal about my issues to friends, family, neighbors and doctors has helped me become more comfortable with my disability. It certainly has been cathartic as well. Lindsey, you and people like you help me figure myself out! And you're so insightful too. I love you for it!

  4. Jinksy, you must have commented while I was working on my comment response for Lindsey, so I didn't see it.

    Asking for things you need is indeed difficult. I hadn't thought of it that way! I suppose pride has something to do with it? Hahaha. I just want to do things on my own I think. Maybe not having had the option to do things on my own has something to do with it. Also, I never had to ask for things -- they were offered or given to me anyway! So I'm not used to this whole "asking" thing.

  5. Dont'think you are the only one who finds it hard to ask for what they need- I never managed to ask my husband for help when the kids were small, but got all cranky when I thought he should have offered! So, you see, your decision would have helped me back then...
    It would be easier to 'chat' if you contacted me via my 'profile'page, so's I had your proper email address. your comments come to my inbox from 'noreply-comment at' which makes you hard to get back to!
    Very helpful advice, ( to any / every Blogee ), that Braja kindly put in one of her blogcomments:- is the address that your comments are sent from. You haven't designated an email address so that anyone can reply. It blocks communication.
    Go to your profile. Click on Edit profile, and then choose the third box down, Show My Email. Simple.

  6. You're perfectly entitled to feel cranky and anti-social sometimes.

    I had to laugh at you asking for one of those pill boxes. I've been taking Topamax for migraines for some time and shortly after I went onto full dosage I had to do precisely the same thing because I could never remember whether I'd taken the darn tablet! It's a simple thing but will take a load off your mind.

    Thanks for the lovely comment on my blog. What you write here is quite special; insightful and honest. I wish you good things.

  7. You are too sweet! Thank you! Writing this blog is cathartic, but I also hope it will help people.

    I'm sorry about your migraines! Does your new dosage of medication help you?

  8. It did eventually. I have recently lowered the dosage though again - I needed my brain back!