MY LIFE

"Those who hope in the Lord will renew their strength. They will soar with wings like eagles." Isaiah 40:31

"For I know the plans I have for you. Plans to prosper you and not harm you. Plans to give you a hope and a future." Jeremiah 29:11

Sunday, March 05, 2006

Well I'm feeling pretty average at the moment. Hardly got any sleep last night, although I did sleep most of yesterday because I felt so crap. Got off to bed about 11pm but couldn't get to sleep til about 4am! Stupid prednisone! Seriously its the worst drug, I guess that's why my specialist is so keen to get my dosage down. To do that though I have to add more drugs to balance out the decreasing prednisone. Went to the hospital on Friday and had my first injection of immuno-suppressents. Good ole methotrexate! Hopefully by having it via injection it will bypass my stomach and not have the incredibly awful nausea side effect. My nurse.. I've got my own nurse hehe... neway, my nurse gave me the injection in my stomach. Wasn't too bad though... I've had worse... but yer um gotta go back next Friday for another one. I'm going to learn how to inject myself so I can just do it at home every week. Fun fun! Yer so that'll take at least a month to kick in and hopefully I'll be feeling a lot better, but there are no guarantees.


It's all so frustrating. Not being able to do normal things and as soon as I think I'm getting better I have another relapse or something. I've just gotta hold onto the hope I'm gonna get better one day. I felt a bit hopeless last week when my specialist basically told me that I could be like this for at least 5 years. I mean, when I was first diagnosed he told me it would probably take about 12 to 18 months to get the condition under control. Its been 2 years and 3 months and there are still so many ups and downs. I'm just trying not to worry about it though. Easy to say but yeah. I'm just trying to take it one day at a time. That seems to work.

"Cause when your in you're darkest hour
And all of the light just fades away
When you're like a single flower whose colours have turned to shades of grey
Well hang on and be strong"

Yeah my life is not too fun at the mo. What I have is basically like chronic fatigue syndrome, as well as chronic muscle pain. I get so tired I physically can't get out of bed and I even start vomiting when I get really tired. It's like my bodies telling me to slow down and rest by making me feel sick. I'm getting better at listening to my body these days but I still push myself way too much just doing normal things like going to school. I hate having to be so careful all the time. It's not as if i go out partying every wkd or anything, or even have a social life anymore. It's really sad... the last time I went out on a Saturday night with friends was last July!! & I got so sick from that I had myself asking, "Is it really worth it?" So yes, it's not as if I have no friends or no-where to go, it's just that I don't even feel like going out. I don't have the energy and I have to put school first because I struggle to get there even if I stay at home & sleep all weekend. I very rarely make it there 5 full days in a row. Its like no matter how much I sleep I don't feel any better. I spose I've kind of grown immune to it now and I don't actually realize how tired I am. If I lie down in the middle of the afternoon I can fall asleep just like that. I actually don't really like sleeping. I'm sick of it. I'd rather be out doing things or watching tv or something. But yer anyway I'm going to head back off to bed for the afternoon lol...

1 Comments:

  • At 2:58 AM, Blogger Carissa said…

    Miriam

    I have Chronic Fatigue Syndrome. I was ill two years before I was diagnosed, around the age you are now (I'm 33). You're right; your illness, or rather your symptoms are very similar to CFS.
    I too struggled with school. I did some school work by correspondence, which helped a little, but the work load was still too much for me. I managed to push through to finish High School (not by correspondence), but wasn't able to do much after that for quite a while.
    Try not to be too hard on yourself for the things you can't do. I'd like to encourage you to keep writing, either here in your blog, or in a journal; I found journaling a great help in my struggle with illness, and you write very well.

    Regards

    Carissa

     

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