My Journey Thru M.E. Part 1: Where it All Began

1 Dec

I decided I should update my About Me page to reflect the progress I have made in the last year. Somehow that turned into me writing out my journey chronologically. Doing so was a bit of an emotional rollercoaster. I cried as I typed; a mixture of shock at how bad things were at times, sadness for the years of my life I’ve lost and utter relief that, touch wood, I have now moved beyond all that to a place where, although ME/CFS is still a part of my life, I am able to do a lot of what I want without fear of relapse and I am in control rather than the monster that is ME/CFS having the final say about everything. In writing up the chronology of my illness I am not dwelling on the past. More, it gives me some closure. I am acknowledging and respecting my journey and what I have learnt from it.

I’ve tried to keep this timeline to just the main parts of my journey. The big things, both good and bad, that have stayed with me. Having said that, it is still pretty long so I will publish it in stages I think over a few days. But please, if you’re reading the beginning and are in a similar position to what I was back then, then know that things have got better for me. There is light at the end of the tunnel.

 December 2010

Caught the flu. Off work sick. Thought I’d be well enough to go back after a week. I was wrong. Very wrong.

January 2011

Still very ill: exhausted, absolutely no energy, chills and fever, sore throat, headache, severe body pain – aching muscles and painful bones and joints even when laying down, brain fog etc etc. Taken back to my parents as too ill to look after myself.  A short shower left me needing to lay down  shattered and in tears due to the pain. Sitting up at the table to eat wiped me out. Barrage of blood tests all came back negative. Possible diagnosis of ME/CFS raised by my GP for the first time. So scared.

February 2011

Appointment with a psychiatrist who provisionally diagnosed me with ME/CFS subject to my symptoms persisting for 6 months. Confused and terrified. Started doing some yoga; literally just 5 minutes a day at first.

March 2011

Forced to cancel my holiday to Las Vegas and LA with Mr B and his family due to being too unwell. Utterly devastated that I couldn’t go.

April 2011

After a lot of arm twisting, persuaded my GP I was well enough to return to work on a part time basis. For the next few months I worked 3 hours 2 or 3 days a week. I got a taxi to and from the office as commuting by train was too much for me. The days I wasn’t at work I spent horizontal recovering enough energy to be able to go to work the next day. I was very very drained. I began seeing a nutritionist thinking that would solve my illness. I was looking for an easy fix, I didn’t realize yet that there wasn’t one.

May 2011

Diagnosis of ME/CFS confirmed by the psychiatrist.  Prescribed me a course of CBT and left me to suffer.  I didn’t understand then why I needed CBT for what were very real physical symptoms. I was too exhausted and ill to cope with it mentally or physically. Bewildered, confused, ashamed and terrified.

September 2011

Saw a neurologist specialising in ME/CFS for the first time. He is still now my consultant. Wonderful man. He was appalled at how ill I was and that I was still trying to work. He diagnosed me with ME/CFS. Signed me off work and I haven’t been well enough to work since. Started me immediately on Amitriptyline for my pain, Q10 for energy, Cipralex for stress and anxiety, Enadh for brain fog. Referred me to an occupational therapist. Started to feel calmer. I had something resembling a plan. Love a plan.

October 2011

Met with the occuptational therapist who devised a daily routine for me, explained to me the concept of pacing and the importance of proper neurological rest and preemptive rest. This approach became my daily routine for the next 2 + years.

December 2011

Moved home to my parents in Lincolnshire leaving Mr B in London. I was too ill to look after myself and trying to do so was making me worse. Mr B drove the 3 hours north every other weekend so we could see each other.  This was life for the next 4 months.

Stay tuned for the next installment in the timeline of my journey through ME/CFS next post. And please remember, it has, albeit slowly, all got better for me.


6 Responses to “My Journey Thru M.E. Part 1: Where it All Began”

  1. someonesideaofluxury December 1, 2014 at 8:27 am #

    Such a sad story with some familiar elements for me. You’ve come so far!

    • myjourneythrume December 1, 2014 at 9:25 am #

      Thanks! Writing out my story from the beginning I really saw just how far I have come. I hope you are doing okay.

  2. thehomeschoolingdoctor December 1, 2014 at 2:13 pm #

    Awaiting the next installment!


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