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!!!

Monday, May 17, 2010

Doing Wheelies!

I am sooooo excited!I just bought myself a wheelchair online! Whoo hoo, I will be out and about doing wheelies in no time LOL. I have been thinking about it for a while and as I said in my previous post, I have been having some pretty good days (by my standards). I really feel like I'd like to try and go out to the art gallery or something. I can still only walk a very short distance without crashing so a wheelchair might just be the way to do it. Of course I'd need someone to push me and drive me to the gallery etc. The only thing I am unsure about is all the other sensory stimulation, lights, sound, people, movement and the likes. It may still be enough to make me crash but I wont know unless I give it a go .... so I am going to do just that!!! and .... I am soooo excited hahahaha!!!

It will be a few days till I get the chair but I will certainly write a post as soon as I have given it a spin.

Saturday, May 15, 2010

Electromagnetic what?

has anyone given a second thought to the possibility of electromagnetic fields making us sick? It's not the sort of thing I'd usually pay any attention to ..... seems like one of those 'grasping at straws' theories, but ....
While I have been without Internet at home my computer has been off most of the day and coincidentally I have felt much better. It came to mind because after 2 weeks with no Internet I got BORED and as a way of passing the time I had started to scan old photos and i was noticing that after 20 minutes at the computer I felt dreadful and has to retreat to the couch again. This in itself is nothing new, 20 minutes is about my limit in general but because I had had the 2 weeks sans computer it seemed more obvious that something was going on. I thought initially that it was just the fact that sitting in an upright chair for that long was the problem, but I have tested that out now. I can sit in the same chair at a desk with no computer to read my book for MUCH longer without crashing. It really seems like being near a computer that is turned on is doing something to me.

has anyone else had any experience with this sort of thing??

Monday, May 10, 2010

Alone (aaawww, so sad)

I'm back online (thank God). I have been offline for a over week because I was changing ISP's. I still only have a temporary connection with minimal downloads but all should be back to normal in another week. I really do feel like I am back from the dead hahaha!

It's been a really odd week for me. I have felt extremely isolated. Aside from no internet my friend Michael who along with Mum and Dad is my major support was away on holiday. I went most of the week without seeing, talking to or even texting another human being, and it wasn't nice. I realized just how dependant I now am on others. If I run out of bread or milk I can't even get some without phoning for help. I also realized that I have been getting through this just be keeping my mind to busy to notice how shitty it really is. Without internet and people to communicate with I struggled to keep busy. Some days I am just too sick to read for hours or even watch TV. I spent a lot of time just sitting or laying around thinkng ... really BAD idea!! All I could think about was what will become of me. Like I said my main support is really Michael and Mum and Dad, and all 3 have health issue etc of their own. All my other friends except one haven't made any attempt since Xmas to see me. I feel disappointed and let down but sadly not surprised. I do understand how busy life is for people but I also know that in the past when someone has really needed a hand I have made time to be a friend.

So .... what will become of me? I do feel envious of those of you who have partners and families, it must be nice to feel safe. I even thing about how nice it would be to just have a little cuddle once in a while.

OMG .... what a sad and pathetic post this is hahaha. I should say that now that my internet is back on I CAN distract myself and I do feel less alone!!! YIPPEEE!! hahaha

Oh on a serious note, what are everyones views on things like stem cell treatment??