May 102012
 

As it is M.E. Awareness Week I am blogging about living with M.E. On Monday I wrote about what M.E. is, on Tuesday I explained how it affects me, and yesterday I wrote about how I cope. Today I’m writing about my future plans.

Today I am having a pretty bad day, and feel a lot more brain foggy than is normal for me. It may have something to do with staying awake for well more than 24 hours before falling asleep around 8pm yesterday (I woke up at 10am). Writing long blog posts may also have something to do with it 😛 Luckily, today’s blog post is easier.

My life is pretty much on hold at the moment. I had to give up college as I was just too ill to get in or do the work any longer, and I’ve even had to give up watching some of my favourite television shows as even when I’m well enough to have them on I’m no longer able to follow the plots or understand them. I am hopeful though that I will improve (and eventually get better completely), and so I keep a list of my plans for the future. Some of these are small, some are bigger, but this is a bit like my bucket list so there’s no known time limit to achieve them. They’re not in any particular order.

    • Go to the library
    • Go to Blizzcon
    • Visit Interface
    • Go on a plane
    • Make a proper risotto
    • Bake a cake
    • Stand up without feeling faint/actually fainting
    • Play Diablo 3
    • Play Starcraft 2
    • Play Pandas! (Mists of Pandaria, the next World of Warcraft expansion)
    • Create an Android app
    • Go see Wicked
    • Have a dancing lesson
    • Go outside, all by myself
    • Go to Scandinavia
    • See penguins in the wild
    • See penguins in the zoo (since that will be a bit easier)
    • Feed the penguins
    • Get another sparkly purple penguin (mine went missing and I’ve yet to find a new one)
    • Go upstairs by walking
    • Go swimming
    • Go ice skating
    • Learn to put mascara on without poking myself in the eye
    • Design, make and wear my own dress
    • Go to Blizzard Headquarters
    • Finish the Undead storyline (In World of Warcraft- I actually have a seperate list with more WoW goals, but I won’t post that here)
    • Read The Shattering  (a World of Warcraft book)
    • Read ALL the Warcraft books (even Knaak. Eek!)
    • Spend an entire day out of bed, without payback
    • Watch all Star Trek: Voyager again
    • Watch all of Star Trek: Deep Space Nine again
    • Actually, just watch all of Star Trek again 😛
    • Start using Linux again as my main operating system (as I only using my computer for games at the moment, it’s currently on Windows)
    • Learn to drive (if it’s safe)
    • Go on a train (Metro doesn’t count)
    • Ride a horse
    • See the Olympic Torch at the Sage
    • Have our marriage blessed in church (this was originally planned to be around our 1st anniversary, but I was too ill)
    • Go to church again
    • Go back to the Linux User Group
    • Go to university
    • Get a job I love
    • Clean the flat by myself
    • Get a manicure
    • Go to Palestine
    • Catch up with my television shows
    • Go to a convention
    • Wear a costume, possibly to a convention
    • Watch Star Wars to see if I like it this time
    • Meet up with friends
    • Be able to rock, flap and bounce again

    This is quite a long list, though it could be longer and I plan to keep updating it. I’ve missed some off- I desperately want to get well, but that’s not something I can just “do” (some of these goals are related to getting better, but I can actually say yes, I’ve done that, such as standing up without feeling faint or walking upstairs). Some of them I may never do, some of them I might be able to do pretty soon if my health improves a little bit. I may have forgotten some things (I hadn’t updated the list document for a while and though I tried to remember the others, my memory is very poor), and there are a few I’ve deliberately not mentioned for my own reasons. I’ve also been able to remove one of items as I’ve already achieved it. That made me happy 🙂

    I want to particularly mention the last one on the list. One of the hardest things for me is that I’m no longer physically capable of or have the energy to do my usual stims (the repetitive movements/behaviours that a lot of autistic people (and a lot of non-autistic people as well) have). These have many purposes for me- they help me calm myself, help me understand and process things, but above all, they make me happy. I don’t normally do them in public unless I’m very comfortable or very anxious, but before I got very ill I used to be constantly in motion. People might not understand stimming, but I miss it.

    Having M.E. can mean your goals change. I never would have thought I’d be excited by the idea of being able to walk upstairs, but that’s one of my goals now. I also had hoped to complete my A Level in Computing, but that is no longer possible. I celebrate every achievement- and that can include little things like eating solid food or sitting up for a few minutes. I’m grateful for what I’m still able to do, as there are people (including some friends) who are too ill to do even the little I can. I pray for more research into M.E. and for a cure to be found, but in the meantime I’ll just keep dreaming.

     Posted by at 5:54 pm

      3 Responses to “Plans for the Future”

    1. I have a cunning plan……

    2. I hope you can do all those things.

    3. […] My Future Plans: http://dannilion.com/2012/05/plans-for-the-future/ […]

    Sorry, the comment form is closed at this time.