Three Days In The Life

Standard

May 12th marks Florence Nightingale’s birthday. It is suspected that she suffered from an illness akin to mine and thus is the day chosen to raise awareness of this most mysterious, relentless and life crushing condition: Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome. My contribution is an intensely personal one: to share the following three entries from my journal with a view to affording non-sufferers a glimpse of what life is like. The context in which these entries are set is the struggle to get from day to day and, in particular, to fulfill my family and work commitments while feeling my strength ebb away and symptoms proliferate.

Tuesday 26th February 2013

‘Oh dear. It is not good just now, not good at all. Over the weekend I had hellish, excruciatingly painful bouts of diarrhoea. Still soft this morning. Symptoms are running very high. Hyperventilation and head swimming, exhausted and uncomfortable, aching. Didn’t sleep well last night and am now in bed at 6.30pm. Meditation during the day is almost like the desperate act of someone drowning. So busy at work but achieving so much less because I’m so debilitated. Just now, head is swirling and neck, shoulders and back ache terribly. No assistants in tomorrow–yippee! Just keep going!

Monday 18th March 2013

‘There are only so many synonyms to describe how truly awful this is. I think on top of all else I’m developing a bout of sinusitis. Head so sore today, vision dissociated, tic in left eye. Did virtually no work. Aching, exhausted and now starting to feel low, bitter and sad. This spell has dragged on since January. I’d challenge anyone to withstand this. I haven’t had a single day recently that hasn’t had either grinding misery or acute scary spells. Over the weekend I did precisely nothing other than read, watch Ashes to Ashes or pick mum up. Yet I still feel so ill. So very, very fed up of this. No escape route anywhere. Life loses its joy, colour, texture and I turn into a blob. It is so difficult to perceive managing again, to feeling capable, jolly, accepting. In truth, being ill every single day really is taxing me to the very limit. Quiet frustration indeed. I have no vitality, I find it impossible to go with the flow; I’m ill, fatigued, helpless and hopeless. Yet tomorrow I must get up and do it again. Perhaps the best way is to be unthinking–the opposite of mindful–because being mindful of how I feel is simply amplifying it. Also, my craving for junk food is back with a vengeance. The crappier I feel, the more I want to eat crap food—ach, this too will pass, this too will pass….’

Friday 7th June 2013

‘It would be an understatement to say that the last few days have been difficult. On Tuesday I had no flu symptoms and managed the whole day at work by pushing it. On Wednesday, just felt really unwell, masses of symptoms so much so I said to my boss at lunchtime that I had to go home. Was wired and tired, couldn’t rest and got very little sleep. Stayed in bed and worked there on Thursday morning then went into work at 12.40. My sister drove me to the train station and I got a taxi from Haymarket to work to conserve energy. Had meetings before my committee meeting. Went to the committee room where it was incredibly warm which I think was the last straw. Within a relatively short time I felt very uncomfortable: hot, heart racing, palpitations, aching chest wishing that the meeting would be over quickly so I could escape. After a few minutes it became unbearable; thought I was going to pass out so I made my excuses and left. I ran cold water on my wrists and lay down. I had a full blown acute episode which refused to subside. Every time I sat up, the world swayed. I’d permanent burping, rigors and feelings of alarm. After a couple of hours an ambulance was called and we went to Edinburgh Royal. Got lots of sympathy for having ME but not one person knew what to do. In fact, the A&E doc asked me! Advised her–rest only. ECG was fine, BP 166/90, HR high, temp 38.5. Classic signs of my nervous system cracking up. This episode was so long–must have been from just after 3 until after 5 before it subsided, maybe even later. It was absolutely, deeply, horribly unpleasant and scared my work colleagues too. And then the saddest thing of all today. I missed Eilidh’s graduation. I got up and got dressed but that effort sent my heart rate soaring. I couldn’t risk having another episode at her school so packed Eilidh off, alone, in a taxi. Wept about it. For the next few days I won’t be far from bed–clear I need lots of rest.’

I haven’t been far from bed since. I didn’t make it back to my work. The struggle continues.

For more information, stories and poems: May12thBlogBomb

Advertisements

18 thoughts on “Three Days In The Life

  1. It all paints such a vivid picture Mary. So many bits & comments I can relate to, eg. “I’d challenge anyone to withstand this” and “No escape route anywhere” I would definitely echo right now.
    Best wishes and encouragement
    Anne

  2. Can’t even begin to understand how you get through your days with this. I admire your bravery and honesty in telling people about your condition and can only offer sympathy and well wishes which seem pretty pathetic I know. Kind regards, Tom

  3. James Cant

    What can I say my friend? I feel a bit useless and wordless. Very much so…
    I know of one person who had this. A terrier of a PE teacher brought to his knees. Literally.
    Keep the faith as best you can. And hope that something emerged to cure this hellish condition. And draw comfort from the fact that you have special people who count you as their great friend. It’s cos of one of them that I arrived on your blog.

    HH xx

    • Oh thank you James. Believe me, your kind words mean a huge deal to me. That you took the time and trouble to offer your support and encouragement is wonderful. Bless you.

      HH!
      Mary

  4. John colvin

    My business partner’s wife has suffered similarly for years and I have seen at first hand how debilitating this condition can be. Initially she was stigmatised as being “overly sensitive” or a bit of a hypochondriac. Hopefully attitudes are changing and good luck in creating awareness of this illness.

    John

  5. My prayers are with you to give you strength and encouragement to keep on fighting this chronic illness.
    My best wishes to you that you have more good days than bad, and that this finds you on a Good day.
    Tom.

  6. Stephen Houston

    Hi MERRYDHOLL First time reading your blog & the circumstances about your illness which has left me with a feeling of inspiration & admiration for your courage living with this terrible scourge,I wish you all the best for the future Take Care x

    • Thanks kindly Phil. So do I, very much so.I’ve been so touched by all the love and kindness I’ve received from everyone today and all prayers gratefully accepted.

      Mary xxx

  7. rachel

    I truly admire your strength in pushing on through your illness. I have chronic depression and anxiety and cannot manage the “pushing on” most days. The aches and pains caused by my mental illness are also severe (for me!) and quite difficult to work around. Thank you for being a voice of strength and inspiration. ♡

    • Hi Rachel,

      Thanks so much. I’m afraid I pushed through once too often which has worsened my condition. I have experienced anxiety and know just how terrible and debilitating that can be. My very best wishes to you as you find the best way of managing.

      Maryxx

  8. Sorry to hear about your condition, you can only keep fighting and you sound like you are just that.
    Keep keeping on and don’t give up.
    If I can suggest some thing, please go on celtic quick news and I bet someone on there could suggest something.
    They really are a clever lot.
    I cannot think of anything else but I will include you in my prayers.

    • Thank you ever so much. Your encouragement means a huge deal to me. Yes, CQN has been a huge source of inspiration and support–not to mention fun, information and great book recommendations!

      warmest wishes,

      Mary xx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s