I am getting ready to go home for the weekend.
I throw a few things into my beautiful overnight bag.
I plug my iPhone into our new dock. One of Linkin Park’s more mellow tunes, Shadow of the day comes on. I remember summer 2007 when I first heard this song. I had it on my iPod as I was waiting for a train to London. MindReader was, then, living there tempoarily. I paced up and down the length of the train station as my 8am (8am!) train was delayed by half an hour. The sun was already warm and high in the sky and all the way down to London I listened to this song on repeat.
I sweep some mascara on my lashes now and look carefully in the mirror. I look tired. Not just in that fatigue-sense that haunts me every day. I look tired of it.
And I am. This time around – this whatever, really – I am no longer morose and weeping and analytical. It is partly because my health is nowhere near as bad as it often can be; I can cook for example though I can’t walk far, or be upright for more than about an hour. It is easier to be happy when you can do some things and, really, other than going to work, I can do most of the things I enjoy to do, in smaller quantities.
What bothers me in the sleepless-nights sense is that I worry my standards have lowered. Is this now good health? Will I soon classify days into ‘could stand up’ and ‘couldn’t stand up’ rather than ‘could lead normal life’ and ‘had virus’? Or perhaps I don’t have such acute fatigue but it is longer-lasting and will therefore become normal, a kind of background fatigue that prevents me doing anything?
In reality, if I am on the brink of another bad relapse, and if it is another four months or twelve months or whatever until recovery (IF I RECOVER AT ALL of course continues to hang over me), then I am having some pretty dramatic thoughts. If that is the case I will no longer feel like the trend is up, but up, down and slightly backwards. What does this say for the rest of my life? My lovely career and house-buying and everything else that everybody fucking else gets to do?
So, my type-A personality has classed the events of the next few weeks into:
* Get better, don’t relapse, rejoice that a recurrence of glandular fever hasn’t set me back and maybe never will again.
* Don’t get better quickly, The End Of The World.
I am doing everything I possibly can to get better. I am doing almost nothing, which is, ironically in the CFS-world, everything. But again come those black haunting thoughts; how will I know I am better if I do nothing? And what if I do something, and lose it all?
It’s that – Internet – I don’t want to settle. Just as I dumped one adequate (ish) boyfriend for The Man of My Dreams, I don’t want to live this half-life anymore. Not only half in the sense that I only stand up for an hour a day, but half in the sense that it is lived in fear.
The song finishes. Another one comes on. Ignition by R Kelly; a guilty pleasure of mine and MindReader’s. I used to dance to it in clubs in see-through tops with wine stains sloshed on them.
I ponder the notion of clubbing and not thinking of sleeping; a pre-ill me.
And it goes on and on.
I hear ya, Billygean, I soooooo hear ya!!
I wish you didn’t! I wish we were both well.
BG
Perhaps that’s one of the (many) powers of this blog; to remind you not to settle, to show you where you’ve been and what levels you were at, to keep striving UP. Not only is it probably a release valve, a place to air, but perhaps a kick in the ass as well?
I do not see you settling. And life is not without fear — and one should not fear Fear — you should only fear the day you no longer are brave enough to acknowledge it.
It’s really strange to seeing the thoughts that have been written by someone else. I am still in my first stages and havent got better and relapsed, but other than that I feel the same. I have managed to find some strength in mind in the last month or so and am trying to stay positive but I agree it is so hard at times. I hope that we can both get well soon and start living our lives to the full and without fear because we bloody well deserve it as much as the rest of them.
Stay strong and I really hope this one is just a minor blip and not a full relapse.
Hays xx
You have such a good way with words. Since finding your blog via an update from Action for ME on my facebook page I’ve tried reading a few others and they just don’t come close to your style of writing. You’ve obviously got a talent. I did eventually manage to get out to buy the June issue of Company magazine to read your piece. The saying goes that your eyes are the window to your soul now in this day and age I think you could say the same about a blog. I could say to my friends read what you’ve written and it would give them an insight into all the thoughts, hopes and fears I’ve had past and present. Thanks for writing about your ups and downs. Hoping you’re soon be on an up…