What Drives You?

78 days ago I started my very first ever blog, stating that 132 days earlier I had come down with a horrid cold that lead to M.E. It is now 210 days since all of this began. This will be my first month where I will not receive a full salary and I am very aware of the long road ahead. Radio 4’s Libby Purves this morning asked her guests, “what drives them?” This made me reflect on my own situation and ask the question, “what drives me? In the face of so many difficulties and so many opportunities to give up a sense of positivity and a determination to get better, what drives me to not give up?”

If I am honest, I don’t really know. I’ve never liked to be the sort of person that doesn’t do well in whatever I do. I’m also highly competitive and the idea of failing to achieve something I’ve set out to do seems very unacceptable. I am driven by a determination to get better. I don’t know when I will get better or whether in reality I will ever be truly ‘better’ but I have an internal determination to not give up.

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When I first became ill (post the cold) my doctor and I thought it would only be short-term. Then it was easy to be positive – I was not going to be sick for long and when I got better, life would thoroughly return to normal. It became clear after the first month or so that this would not be the case. I was not making progress, if anything, I was going backwards.

The challenge in those early months was the determination to learn as much as I could about this illness, educate myself to the point where I could begin to direct my own treatment, begin to take control of what was happening to me and what I needed to do to make progress.

Don’t get me wrong, there were long days and weeks where making progress or feeling hope was incredibly difficult. It seemed at times that my health was only going in one direction – down hill. I felt that it was inevitable that I would join the ranks of those where were severely ill with M.E. – housebound and more likely than not bed-bound.

Despite this sense, I still somehow managed to retain the drive to stay hopeful and try and do something about my situation. It was, however, only when I thoroughly accepted that I was seriously chronically ill that my health began to improve. For me it was the acceptance that I was very ill that made each aspect of my treatment (pacing, meditation, medication, exercise) take on a new very important role. To fail to stick rigidly (as much as one can when you have M.E.) to my treatment plan was to quite simply postpone the point when my health returned to something resembling normality. If missing a tablet would be consider medically foolish, then surely continuing to walk when I began to tire was no different.

Over the last few months, I have had a dawning realisation that this illness has given me an opportunity. I can’t exactly describe what this opportunity is, it has yet to become clear. I can’t help however feeling that my life will change utterly when I am ‘better’. I have always firmly believed in the old saying – every cloud has a silver lining. I am excited now to discover what this opportunity may be and this is helping to drive me not to give up, to stay strong and determined.

Now I also have the additional knowledge that I can reduce the impact of my illness on my life. I have had several weeks of feeling ‘well’ (at least in relative terms). So now when I have a bad day or a bad week, I know it is in me to feel better again. I have the means to do it. It helps retain a sense of hopefulness and further reinforces my sense of determination that I will get ‘better’ and I won’t give up.

I am certain that 365 days of being ill will come and I will not be ‘better’. I know that the road in front of me is incredibly long. I know I will have dark days. I will have days where I know I have done too much and will kick myself for not having stopped earlier. More importantly, I know that I will retain my drive to keep progressing and I will not give up.

See also my other non-M.E. blog – Me Opinionated! Really?

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9 thoughts on “What Drives You?”

  1. What a co-incidence! Last evening at a Toastmasters meeting I got talking over a cup of coffee about ME with someone I have known for years. Almost immediately she said something like: “Oh that’s a horrible fatiguing thing and a positive attitude of mind seems to benefit sufferers more than anything else.” She happens to be head of the Nursing Training Unit of UCC. Karen,looks like you’ve got it right again!

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  2. Karen,

    You inspire me. I don’t know what I have. I’m in the diagnosis journey right now. Regardless, you are like one of the tape recorders in my head. You help strengthen the one who remains realistic, yet holds onto hope. Thank you for blogging your journey.

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    1. Thank you. I was beginning to wonder whether I was getting irritating with my blogs! Your comment suggests otherwise! Remember a diagnosis just confirms what you have already so the journey is only an official concept (though very relieving when you get one).

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      1. Yes, the diagnosis is just a confirmation. I like that… Without one, I keep going back to “well maybe this is in my head”, particularly on better days. Unfortunately, this leads me to push, then crash… I’m getting better at accepting that regardless whether or not it’s named, it’s something and is a chronic illness. The more days I accept that, the more better days I have. Your blog helps remind me to do that and how to better use my “can do” and competitive, driven attitude. Thank you again.

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  3. Hello,

    I am a student journalist from the UK, currently studying at University of Technology Sydney. I also suffer from CFS.

    I am writing a colour story/feature on recent scientific discoveries linked to CFS such as the study (April 2014) where evidence was found that CFS sufferers have neuroinflamation.

    I have experienced the stigmatism attached to CFS so I am writing this story to discover what it means to people with CFS and the positive affects scientific evidence can have. I am also interested in those involved in the research and raising awareness process to hear their opinion on the fact that there is now scientific evidence linked to CFS.

    I wondered if I would be able to speak to you for my story?

    Kind Regards,

    Emma Louise

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