Today it’s almost 18 weeks since I first fell ill and I thought I’d share a post I wrote but didn’t publish 9 weeks ago. At the time it felt too raw to put up, but now I can see the worth of having written it, because things are better. I have made some changes, begun accepting and working within limitations, and some of the despair that accompanies this post is not with me daily anymore.
Monday 16th February, 2015: Today I had a beautiful brief moment of lightness. I came home from the movies, opened up the house to the fresh air and for 10 seconds had a little dance in my lounge room to the radio. Later, in the bath, my daughter splashed me with water in anger and I splashed it back so hard it covered both of us. It ended in tears and as she ran from the bathroom after I got her out of the bath she slipped in the water on the ground. My anger turned very quickly to concern. My nerves were on edge. It was bad.
I feel so tired tonight. So heavy in the limbs like I’m covered in cement. I get enthusiastic and think of plans for the next day but as time marches on the options limit and I know I can’t do what I want. I don’t know how I’m going to get through this. I try to take it day-by-day, and that sometimes becomes hour-by-hour, minute-by-minute as I remember to worry only about what faces me now. What can I do right now. What can’t I do right now? I feel like everything is based around time. I watch the clock at night knowing I should be in bed by nine, feeling bad when I’m not. I look at the picture of my daughter on the fridge and feel the sense that time is slipping away from us. It is unbearable to consider a future where this affliction still remains.
I don’t think other people understand. I mustn’t take it out on them though; they just see me looking normal wonder why can’t do things. Right now I feel tired and I worry that I’ll feel the same way tomorrow and I have no other choice but to go to bed, if I stay up I know I’ll be tired and tomorrow will be ruined. If this continues and makes me a bad parent I’ll have to change something. Work less or differently. It’s up to me to make it work for us.
I’m trying to work out if I can go out with a friend or not make it? Something I would have normally had no trouble doing. I am realising that I must mostly live in the day, which is fine because that’s when my daughter spends her time too. So I plan to go to bed by 8:30pm and then wonder if I will wake up early because I’ve had enough sleep – still feeling unrefreshed. Lying there feeling cemented to the bed, unable to relax my limbs no matter what position I put them into, suddenly aware of my body as the very first thing before I even think – the heaviness in my limbs. The grogginess also never really leaves. Today we went to a 45 minute class at the library at which the majority of exercises were so lightweight most grandmothers there could do them, but I couldn’t. I have a permanent bad taste in my mouth; I think it’s from the anti inflammatories. Metallic meets ash. I don’t think anyone understands and it’s on my mind constantly. I try not to but it’s hard not to worry about the days coming. How they may not be any better. I feel so behind at work. Everything is harder and the worst part is I can still remember clearly what it feels like to feel great. I remember coming home after work and sitting on the lawn in the sun blowing bubbles with my daughter, feeling great.