Thursday, May 27, 2010

Riding the Roller Coaster

Up down up down round and round … I can’t seem to keep up with how I feel, one day it’s pretty good, the next is total crap. The unpredictability is starting to really annoy me!
I do have a few new things to report and I am not even sure which are the good bits and which the bad?? Hahaha

Firstly, I did go for a quick spin in my wheelchair. My friend Michael took me out for a ‘test run’. I didn’t want to do anything major until I was sure I wasn’t going to get massive payback! We went to ‘the Green Bridge’, which is a new pedestrian bridge that goes across the Brisbane river. It’s about a 10 minute drive from home and Michael simply wheeled me across a back again, which was about a ½ hour ride in the chair. I felt ok afterwards and was really pleased so I suggested we do a detour on the way home and stop at the RSPCA (animal refuge). Michael is after a new budgie and I thought we could stop and have a look. Bit of a mistake I think! There was a big line up and lots of kids running around and screaming and it was just way to much for my poor little head.
I think it made me crash over the following few days.

Secondly, I have started taking D-Ribose which is a kind of sugar that your body needs to generate energy. I wont go into the technical blurb but do google it if you are interested. I am hoping it will give me a boost but in a way I am also hoping it doesn’t, because, it is unbelievable expensive. 200grams for $85 …. OUCH!! I worked out 200grams is about a 10 day supply. So I don’t know how long I could afford to be taking it. Anyway, I will give it a go and see what happens!

Thirdly, I have been having real trouble with my body temperature. I check it all the time and it mostly sits between 35.5 (96) and 36 (96.8), it is supposed to be 37 (98.6°F). Last night I woke up feeling HOT, my temperature was 39 (102.2). I just can’t seem to be able to regulate body temperature. Today I feel like I have been repeatedly run over by a bus.

But …. The good news ….. um …… thinking, thinking …… nope, can’t think of anything just yet! Hahahaha.
My mood is still fine and dandy which is the greatest news!!!


  1. Your mood is the most important part when battling illness like this! Glad to hear it is managing to stay up! :)

    Hope things improve soon!

  2. Awesome news about your successful trip out. It's always the little detour on the end that does one in!

    If the d-ribose seems to help you, maybe try as a supplier - the prices in Australia are ridiculous!

  3. Sounds like the pet shop was a step too far. It wasn't that that made you crash but the combined activity. You gotta remember the 80% rule because you need 20% for recovery. Hark at me! If only I would take my own advice. Weeping with fatigue in the kitchen this morning because I stayed up for a cup of tea with the neighbours last night.

    Despite the ups and downs, sounds like you are getting a handle on it. Well done you!!

  4. I'm thrilled you felt well enough to get out and about and sorry that you are now crashing. It's so hard when out and feeling well, not to push yourself just a little and then pay greatly later - I know the drill well.

    I hope the D-Ribose helps and that you are able to find a supply at a lower price (why is it those things that help us the most we struggle to pay for?)

    Glad to see you posting again.

  5. Aha....that old pitfall...the greedy 'just a few more minutes.' We've all done it, though in my case at least, for a bit more than a budgie ;O)

    Do hope the D-R helps. Maybe look at LDN too...some poeple find it v. helpful though unsure about it being presribed in Oz. Very hard to get in UK

  6. Cool about the wheelchair, Lee Lee! Whatever works, right?! Wow, what a change for you, huh. Thanks for the reminder about D-Ribose, I am going to re-check into it...

  7. So great you got to go out.. I have to remind myself not to do that extra thing after 1 successful activity, but it is so hard to take the 'leash' and lead myself back into the house. Further proof of how vibrant we would all be if we had energy. Maybe if I had a hyperbaric oxygen chamber I wouldn't mind being stuck inside. I always end up gulping for oxygen after mental or physical activity.

    Your good mood is inspiring!

  8. Here's a google map where you can add it your location as CFS folks.


  9. Hi Lee Lee. I've started using d-ribose, and I think it helps. It's hard to quantify, but I definitely think it helps me with recovery time and just feeling better overall. Now, since you're kind of in flux right now, with your symptoms being erratic, it may be hard to tell if it's helping or not. Good luck. Have you tried getting it on the internet? I know that's where I found it, and it didn't cost nearly what yours does. I hope the shipping isn't too much.

    I have serious problems with temperature regulation, too. I go to bed freezing and wake up in the middle of the night with the covers kicked off. I know I'm starting to crash when my body temp plummets. Ah, the funny things we figure out along the way, eh?

  10. good luck with everything mister