Tuesday, October 11

dark days

I woke up this morning and from turning over a couple of times and opening my eyes, I didn’t think it was going to be bad day (I used to be able to tell).  Anyway, I couldn’t afford to be sick today – I had an Alexander Technique lesson to attend, I needed to work out on the gym, practice my flute, go to Vic Roads to change my name...but my body had other plans. It told me quite decisively after my workout that I would not be going into the city but would instead be having a restful, home day. Personally, I’d like 24 hours notice. Anyway, it turns out that I am enjoying my unplanned day because I get to lie in pajamas watching The Princess Diaries, ponder what it’s like to be royalty and eat nuts. One day on the couch every now and then doesn’t get me too down. It was a very different story when every single day was like today, but so much worse.
My best friend gave me a scented diary with a teddy bear on the front when I turned eight, and so I began recording my life, and have done so ever since. This year, I’ve filled only a few pages in my diary, and most of these entries have been written when I’ve been depressed and deeply saddened from being so sick. I think back on the first 7 months of this year as the ‘dark days’. Some of the time I could clearly see the glimmer of hope and feel real joy; I knew it wasn’t going to last forever, and was happening for a reason. But knowing something and feeling it are two very different things. A lot of the time, it was like walking along in a pitch black tunnel. No idea when it would end and missing the sunshine so very much.

Below are some blah diary entries...
27th February, 2011
Tomorrow Ben goes back to uni, and work e.t.c. And I’m so scared about being at home, sick...missing my family, flute, friends, energy....and so lonely. And I fully know that studying would be worse and is now impossible for me, but I grieve for it! All my friends are going back to uni. I wish I knew why it was me and not someone else. I just am so sad, I feel like I should be all strong and brave, but I’m not brave. I’m a miserable puff of wind.
24th March, 2011
Ben and I both cried this afternoon as we come to terms with how different life has to be with CFS. Even doing one thing a day, I am barely coping. Life, just doing simple things like showering, doing the dishes, going for a walk, seeing my family – it just exhausts me and I have to go to bed. It’s not so much the tiredness, but all the other symptoms.
12th May, 2011
I really am not doing well with my diary this year! Lying at home sick really doesn’t inspire me to preserve the events of life...I used to have exciting things to record, events, concerts, happy days. Life is something of a drab grey monotone at the moment. Dull. Hope less, and now sort of dreamless. I’ve been really unwell. Can’t sit or stand without nearly fainting. Bored as hell. But I’m not going to write about all that.

 It’s not surprising that people with long-term illness struggle with blahness...in my worst days, this is what life was like:
I used to wake up at 9.30 am. I tried to sleep in as long as possible, to pass as much of the day as possible – unconscious was the way to go. Ben had left for university or work a couple of hours earlier so the house was dead silent. I would go to the kitchen and have some breakfast – and then take the time to swallow a handful of large pills (which sometimes got stuck down my petite throat, and burned ferociously). Then it was time for my shower. Lifting my hands to wash my long hair had the effect of making me dizzy and faint, so I had to do this squatting or sitting. Unfortunately, the shower was so exhausting that I would put my pajamas back on, and climb back into bed, utterly wasted. At about 12.00 pm I felt ready to get up, and would nearly faint as I hopped out of bed. Now I could either type an email, listen to an audio book, put on the washing, go for a short stroll....something. But in an hour or so it would only be 2 pm. Still three long hours till I got to see a human being and use my vocal cords for the first time that day. I would be beginning to get bored, and really blah. I listened to CDs, I bought paints and I tried knitting (in those dark days I couldn’t read because my eyes couldn’t focus on the words, or watch DVDs) but the latter two were boring. I’m an atrocious painter, and can only really do pictures of badly proportioned ballerinas and toddler landscapes, and knitting is as boring as counting sheep. So when Ben arrived home at 5 pm, I had lost my entire personality, and didn’t know whether to laugh or cry. I wanted to be joyful that I’d made it through another lonely day and he was home with me and would now care for me, but I wanted to cry because it had been so awful and I’d held myself together for so long. And there was that terrible reality that when we went to bed at 9 pm, I would fall asleep for all those hours I could be spending with him, and awake to an empty bed and another long day.

No comments:

Post a Comment