28 December 2009

My story

Recently, I was invited to join a group on facebook, run by the Whittmore Peterson Institute. I was drawn to this particular page because it provided information and updates on the recent research findings with regards to XMRV. Until now I have not written up my own story and experiences of fatigue as I don't like to focus so much on the illness, especially when it is a 'diagnosis of last resort' and has a psychosomatic undertow. This is probably the same reason that has kept me from accessing support groups. I often find it hard to sit down and acknowledge being sick - I would rather spend what little energy I have on things unrelated to illness, or more recently, promoting awareness and education around CFS.

I'm 27 and an Occupational Therapist. I live with my husband, Saul, and our two Burmese, Madeline and Francesca, in Dunedin New Zealand. This is how I define myself. But I have illnesses and disability, which interfere with this definition at times. Occasionally, I am a sick young woman, who feels I have no justification for spending three days a week in bed. At times, I am the wife who may miss out on extended in-law family celebrations, or the sister who gets fed up because she gets too tired to process conversations.

For reference, I was also born with a mild weakness on my right side - a rare form of Cerebral Palsy, which affects me only when I'm very tired - ironically. But this story is about Chronic Fatigue Syndrome.


At 14 years of age, I got diagnosed with Epstien Barr Virus (EBV). Like many kids at school. The difference is, this tiredness, this fatigue ... just ... never ... abated. At that stage I was in bed for 6 months. You all know this story, getting up and having a shower is akin to climbing Mount Everest. Now for any teen who is at the age where they are beginning to develop socially, it's tough to get used to suddenly being too exhausted to even walk out to the letterbox. For someone who was previously involved in sports, art groups, going to friend's places, meeting people, it's even harder to suddenly be in bed all the time. I mean, I had a pretty room, comfortable pajamas, but that's not what life is supposed to be like. I couldn't even watch TV, it was too hard to process the whole visual/auditory stimulation. Reading was out because I couldn't follow a train of thought. I'd have weekly or fortnightly visits to the doctor and I would stress for a whole day beforehand about how I was going to be able to get up, get dressed, travel in the car and sit and wait for the doctor then return home. Even sitting became a problem for me, and I still struggle with the need to lie down frequently. I would be hot and then freezing cold. That first summer, I spent the whole time wearing a wool jersey. Of course, school went on hold for months, but I gradually got back for two, then three, then five half days per week. I left school with the bare basics to get into University of Otago. And that threw me. I'm an academically orientated person - I love science, I love study and I love learning. And yet even that part of my life, that part of 'me', was being compromised.

And that was probably the exact year when I literally said 'sod this - I will fight for the me that I want'. So I did. (Stupidly enough in retrospect).

I joined support groups in the community. I took on roles of coordination and committees and any group that could give me the 'me' I wanted back. I put my name down for voluntary work in the community. I entered into Occupational Therapy school, I moved out of home. I was living a 'normal life'. And getting very very sick. I had to cut my hours at the OT school. I had to move back home at the end of that year (my mother had wanted me home at the start of the year - she could see what was happening, but I thought I could push through). I had to give up the voluntary work, the groups and the committees, and consequently that Christmas was 10 weeks in bed. But after taking five years to do my three year degree here I am. I did it. In retrospect I really should have pulled out, taken a year off, but I was too stubborn. I didn't want to be 'lazy' or a failure. And I knew people in my peer group would see me as just that. Of course now I've learnt that I only have to prove myself to me. And, though I have always been reluctant to cite Chronic Fatigue Syndrome for not getting where I want to be, I do need to acknowledge it.

Today I still struggle with balancing my life - I work 30 hours a week, which I monitor well. I am excellent at pacing work, but I still have a very strong tendency to take on a lot of extra things that I don't have to. I do 'overdo' it at times, and pay for it afterwards. I cannot process too many sensory stimuli at once (usually noise, which is a pain because I love my music). I cannot tolerate too much going on around me but I didn't relies this until maybe two years ago, that too many people, too much noise, colour, busy-ness just shocks my system and I relapse.

But I have done this, I have found the 'me' in the M.E. and I can define myself outside of this disease, which has always been and always will be a hard journey, but it's been worth it.


In future post's, I aim to refrain from discussions about what treatments have or haven't worked for me, as it appears that many different treatments can work for different people. I will write a post on what CFS is, and the diagnostic criteria.

1 comment:

  1. Thanks for sharing your story, Emma-Kate. I have this feeling like I sat down for a cup of tea with a friend. Here's to the future...and hope for you, and my little girl, too.
    (Jennifer Hankinson)

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