The ME/CFS Ghost » 21 January 2015

Daily Archives: 21 January 2015

Birthdays, Juggling and ME

Birthdays, Juggling and ME

It may be a strange thing to say on a blog where I write about chronic illness, but I don’t really think about being ill or the effects it has on my daily life. Most of the time I practice mindfulness and I try to live in the moment. There are a couple of times a year when this is not so. The first is 26th August, the anniversary of the day I became ill, and the other is today, my birthday. It’s normal for my birthdays to be a time of reflection for me, and this year is no different. But the flavour of that reflection depends very much on what is happening at that time in my life. Some years, especially in the beginning of this illness, I was angry and depressed that I couldn’t celebrate with friends or go out for my birthday as I had in the past. In later years I was just glad I survived another year. This year is different.

I’ve been very ill for the past fortnight and I’ve been really struggling. The physical symptoms are nothing I have not endured before and I know it will pass. However, this suffering is made all the worse because it is payment for the socialising I did over the Christmas holidays. I didn’t even do that much; I spent time with my family and my favourite cousins and only left the house on 3 occasions. I loved every minute, but it cost me dearly. So the past few days I’ve been thinking of loved ones, especially the ones I have lost. Today is the second anniversary of the passing of Uncle Giani and I find myself remembering him and all the other people that have been lost along the way.

As remarkable as it may seem, this illness has helped; it has forced me to simplify my life. There is no more ‘should’ because I no longer feel like I have to do anything I don’t want to. No longer do I feel the pressure of ridiculous obligations. I now only do what I want to and I only spend my precious time and energy with those that I love and I’m totally indifferent to everyone and anyone else. But how much time and energy do I have even for those that I love? My dad just called from his holiday home in Goa to wish me a happy birthday and I could barely speak. This is what weighs on me; the fear that I can’t even stay in touch with my loved ones because of my health.

I’m 39 years old. 30 bloody 9! This is the last year of my thirties and it’s not so much the age that affects me, but the fact that I’ve been performing this ME juggling act since my mid-twenties. Keeping those balls in the air gets harder and harder and this is not always because of deteriorating health. I may have been in a kind of stasis for over 13 years, but the world around me has been speeding on. This means that more and more balls are added all the time. My nephew is 16 months old and I want to see him more, there are other loved ones that I want to see, also I have so many more projects that I want to complete, but I juggle and I juggle, always trying to make sure that the most fragile ball, the one of my health, stays aloft, even if I have to let others fall.

I’ve come to accept that there are things I just cannot do. I was once an avid traveller, but I no longer even have the desire to travel. The same goes for so many other things that I once wished I could do. But how does one give up the desire to spend time with loved ones when life is so short? Even if I could, I don’t want to. If I get one wish for my birthday, it is the hope that the ‘health’ ball becomes less fragile before my next birthday.

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