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When Your Illness Turns You Into a 'Crier'

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Let me start by saying that I am not, and never have been, a “crier.” OK, so I cry at funerals (but try my best to hide the tears from everyone except my husband) but other than that, I don’t generally cry. In my previous, pre-mylagic encephalomyelitis job, I had a reputation amongst my colleagues for being “dead on the inside” (said with love, obviously). I even managed to get through two pregnancies with my tear ducts relatively unaffected (apart from sobbing in front of “ET” three weeks before my due date with baby number 1). 

So why can’t I stop crying?!

At the time of writing I’ve had undiagnosed ME symptoms for just over 10 months, thinking it was just a ridiculously long recovery from the bout of pneumonia I had at the end of last year. For the last couple of months I’ve become very tearful, beyond the usual “Why do I hurt so much? Why can’t I breathe properly? Why isn’t it getting better?” frustrations. In particular, I’ve cried because I feel so mentally overwhelmed by things that I would “normally” take in stride. (Since my diagnosis and the swathes of internet research I’ve subsequently waded through, I’ve come to realize that these feelings of being “mentally overwhelmed” are yet another symptom of ME — my version of the “brain fog” so many people describe.) In fact, I’ve cried so frequently over the last few months that the “puppies on a roll” are running out so rapidly, I may well have just invented a new category for Crufts! 

Here are some prime examples:

Additional stress at work + childminder suddenly reducing their availability = major tearful meltdown (fortunately, in the comfort of my own home). 

Having to cover someone’s class due to staffing shortages + late night marking = yet more tears.

And so on…you get the idea.

This week, however, we have reached a new high/low (depending on how you view it). If there were ever a time we decided to buy shares, this would be it… in Kleenex (other tissue brands are available).

To summarize, these are the reasons why I expended most of my bodily fluids (not those ones) during the last seven days:

Friday: (pre-diagnosis) Spent the whole day doubled over in pain (while still holding down my job as a Deputy Head and teaching PE in the afternoon).

Hospital confirmed that there was no way to bring forward my appointment with the lung specialist — ho, hum only six more weeks to wait then!

Saturday: Walked (very slowly) to the hotel at the end of our street to drop my daughter off at a birthday party. Couldn’t breathe. Felt like a 90-year-old trapped in a 36-year-old’s body (again).

Monday: I was admitted to a ward! I had stew and dumplings for lunch! My husband brought me a Christmas cooking magazine! I finally received a diagnosis! (This was a happy tears day!)

Tuesday: Diagnosis starting to sink in.

Wednesday: Discovered that ME can get progressively worse. Some people are housebound. Some bedbound. Hmm, might be more serious than I first thought.

Thursday: Doctors confirmed I would be waiting months until I got to see an ME specialist, unless I was willing to pay (I’m not).

Friday: Return to work meeting planned for Monday. No, I’m not sure what will help. I’ve never had ME before. Well, apart from the last 10 months…

Things I haven’t yet cried about, but no doubt will at some point in the near future.

  • Having to make changes at work and actually ask for help. I love my job. I like to push myself. I now need to learn how to reverse the “I can do it all” habits I’ve honed over the 20 years I’ve been in employment.
  • Coming to terms with the fact that my career plans (Headship, conquering the world, etc.) are going to be put on hold and, more than likely, abandoned altogether.
  • Being frustrated when I eventually get to see a specialist, particularly if their recommendations contradict everything I’ve been reading in forums, from people who are actually living with ME.
  • Not being able to walk the dog in the morning before work and feeling guilty that my husband has to get up at 4:30 a.m. to do this.
  • And lots more besides, I’m sure.

However, at the moment, I’m feeling positive. I’ve already made lots of little changes which will hopefully help me with managing ME and I’m open to the suggestions and advice readily available in forums all over the internet. 

In the meantime, I’m going to stock up on toilet paper rolls, just in case…

Originally published: October 18, 2016
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