Wednesday, June 2, 2010

Ron Mueck on wheels

Well, I did it!
Yesterday my friend Keiryn came and got me and my new wheelchair and took me to the art gallery. It was my first real outing in the wheelchair and in fact my first real outing since getting sick last November. I have to say that I was dead scared! The art gallery is a 10 minute drive which on a bad day is enough to knock me down, and then we'd have to park somewhere and get from there to the art gallery and find the entrance and pay for tickets .... all simple stuff but all tasks that require thought and energy. I was so worried that I'd be wiped out by the time we actually got inside. It was all fine though, for at least 20 minutes. Keiryn pushed me round the exhibits and it was nice. Unfortunately there were lots of people and I found that the combination of lighting and all the movement made me feel really dizzy. I was also having some weird kind of trouble with my vision. I can't really explain it, but it was weird.

Aside from the scary stuff and feeling dizzy and odd, it was totally fab to be out somewhere nice and the exhibition was FANTASTIC. The photo is one that I took (the artist - Ron Mueck encourages people to take photos). Ron Mueck does these unbelievably lifelike sculptures of people but they are either huge or tiny. Very talented man. Oh, the other thing that happened which I hadn't been prepared for was bumping into someone that I used to know before I got sick. He came up and gave me this look of disbelief and said 'so what's with this', meaning the wheelchair. I didn't know what to say .... I just kind of said 'um, nothing really' ... It was a strange encounter and reminded me very much of what it had been like bumping in to people after my partner died. Neither of you know what to say and it's just awkward.

Anyway, I was expecting to have huge payback with flare up today, but so far nothing major .... so fingers crossed that it doesn't arrive tomorrow instead hahaha.


  1. I often have weird things happen with my vision also. In fact, that symptom came on really early on. In my case, it's triggered by florescent lights and too much movement, it is quite annoying.

    I'm so glad you were able to get out with your friend and enjoy the day - I'm also hoping you don't "pay" for it later. It might be best to just prepare for a few "down" days.

    I'm sorry it was awkward running into someone from your past, that's something I haven't had to deal with yet, but I'm sure it was very difficult for you. Remember though, there is no shame in the truth.


  2. SO gald you got out & about for even a little while and to something stimulating (in a good way). Mind you, places like big galleries are hard work for PWME --- lots of people, movement, lighting etc ..and so much sensory stimulation. Still, you did go and you got something good out of it.

    Meeting up 'with your past' is strange. Even the people who know/knew you were ill don't seem to know what to say so imagine how it is for people who didn't know you were ill ! Its shock and embarassment I think.

    Hope you can get out again soon and enjoy it ;O)

  3. How wonderful to get out to an exhibit, even if things went wonky visionwise... I think I've had something like that, too, very hard to describe though.

    I'll admit I've seen people I used to know in stores and tried to avoid having them see me because of the extra energy involved in social interaction...

    I can imagine that being in a chair could require extra exertion in terms of looking up to see things and talk to people. I often have to angle my head down and keep my eyes away from lights when I'm out. Sometime if I look up at something on a higher shelf or even to face height I get a pinching sensation in the back of my neck and worsened OI. You would also be looking up into the light a lot from chair height.

    Glad you went out anyway and saw some things... and a real outing to an actual interesting place! Take care,


  4. I saw your pics of this on FB and thought it's an exhibition I'd love to see. Although I'd probably have all the same problems you did. Sensory overload sucks! I've found earplugs or iPod help a bit, but then has the downside of isolating you.

    People I knew before I was ill rarely ask me how I am. It's the same awkwardness. But before I got sick I thought if you needed a wheelchair you couldn't walk at all. So if I saw someone step out of their chair to do something it was totally astonishing. So I suppose we can't blame The Normals for their reaction. It's why raising awareness is so important.

    Loving your latest images by the way.

  5. At a women's march one time I pushed someone along in a chair, with help form someone else. At the end of the march, the woman got up out of the chair and carried it over her shoulder to the chair area a ways away. I was astonished but realized that though she had very strong arms, she couldn't walk for distances.

    Harder for people to understand that if one of us is in a chair we might also have brain fog or sensory overload. I still walk but meeting someone out in a public place and having to stand while talking to them is one of my worst scenarios...

    I generally have not enough blood getting to my brain to even think of anything to say if I have to stand still much at all. I find myself smiling and nodding and it's fairly obvious I haven't understood what's someone's said, but of course they don't understand why...


  6. It does look amazing! Although, I think I find that giant baby a bit scary : )

    I'm so happy for you that you got to venture outside. It must have been strange for you in the wheelchair for the first time coupled with all the other stimulation. Well don you! x

    Glad you didn't suffer to much the next day.

  7. Thanks everyone :) It was really good to get out and about and after a few days I can safely say that I had minimal payback!!

    I saw my Dr yesterday and he suggested that I have a stanadard response ready that I can use if I bump in to people I used to know etc. He said why don't you just say you have an immune disorder and leave it at that .... must less complicated then having to explain the whole CFS thing ... It's a good suggestion I think :P

  8. Wow, I loved this posting! Thank you s much for your honesty. I too have had odd situations with people from the past, but I figure that we are put in these positions of ill health to educate people.

    If you are comfortable with it, I think that your standard response SHOULD include saying CFS. People NEED to learn more about it, for our sake and for the sake of others yet to be diagnosed. Perhaps say "I have CFS. It is a neuro-immune disease." .. Then when people say that they thought CFS was just being tired a lot, you say that it is not, it is much much worse. That is what I say. Then I just ask them to help me raise awareness if they say there was something they wish that they could do.

    Either way, you did nothing wrong in any way! You are brave and wonderful in every way to have gone out as you did. The body may pay for it a little, but the soul will drink it up!


  9. so important to get out! Kudos! I'm in agreement that you should raise awareness about CFS when people ask - for your sake, and for mine. I have found that a lot of doctors don't really believe in CFS and they seem to think I was making it up, but the book "Beat Sugar Addiction Now!" is written by a doctor and he knows so much about it. I feel like I learned a lot about my own body just by reading the section on CFS, and it made me annoyed that no one had told me this before. I started reading the book because I thought it was a diet book and would maybe help me lose weight, and if I wasn't carrying around so much weight maybe I would feel better overall and be less achy. But it's actually a whole part on CFS is in it and I learned a lot about my hypothalamus that I never knew before. The information is good and smart science but not too hard to understand. You need to find help if you have what I have-so much pain it hurts to pull my shirt over my head or bend down to tie my shoes. I had to start wearing ugly crocs just because they were easier to put on and more comfortable, and that is not who I wanted to be-a fat person in unstylish shoes who has trouble getting in and out of the car. I feel like if I can find a doctor who will help me and I can do what it says in this book, I will get a lot better. It is written very convincingly and you can tell he knows what he's talking about. Plus he has a list to help you find doctors that treat CFS and I am ready to get treated and stop feeling like my nerves are exposed every time I move. Here's the website for Dr. Jacob Teitelbaum:

  10. I'm a bit behind on my blogs Lee Lee, but I was so happy to see that you got out to see the art exhibit. I hope you didn't have any delayed payback from it. Great post!

  11. How wonderful that you were able to go to an art exhibit. I love going to see art.

    Hey how did you find your wheelchair? I'm trying to figure out what to get and all that. I'd like one of the motorized ones but they are expensive!

  12. Hi Lee Lee, I'm new to blogging and relatively new to ME/CFS (finally diagnosed a few months ago) but just thought I'd say hi! Look forward to reading more of your blog.