M.E./CFS

Me and M.E. – Life is a Juggling Act

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Sometimes, there is a fine balance between managing one health condition and stirring up the rest.  I often find that if one condition is flaring, then it’ll cause some disruption to another one and I’ll flare with it later on.

The biggest thing I used to have be manage carefully was the fatigue, but now it’s the pain.

I was diagnosed with M.E. (myalgic encephalomyelitis – also known as Chronic Fatigue Syndrome) about 2 years ago.  At the time, I was struggling to go from day-to-day life without feeling like I’d been hit by a truck over and over – my limbs would be so heavy and achy I’d find it hard to move, I couldn’t string a sentence together and my notes or referral letters at work would be full of errors and things that didn’t make sense.

I flagged these symptoms, along with a persistent sore throat, headaches and feeling permanently like I had a cold or other virus, several times, until it got to the point where I could no longer physically work.  My GP finally came to the conclusion that I had M.E. and the reason I hadn’t been diagnosed sooner was because it’s diagnostic criteria say that a patient must have suffered or be suffering with the symptoms for a set period of time (you can read more information all about M.E. in my article).

After being referred to the Fatigue Centre at my local hospital and being reviewed by numerous specialist, they came to the conclusion that the M.E. had been triggered by years of pain and multiple operations in such a short space of time – the overwhelming large stresses that had been put on my body had caused an autoimmune or inflammatory reaction.

And it made sense, because in the early months of my diagnosis, if my pain was better, my fatigue was better, and if I suffered a big flare up of pain or other Endometriosis or bladder symptoms, I’d end up paying for it a few days later.

The delicate connection that my illnesses have means that I have a bigger awareness of my body and conditions might react, so I can often plan for days or events with a bit more ease.  Over the last few weeks, having dealt with searing pain, ruptures and a nightmare periods has meant I’ve taken every opportunity to rest.  I’ve learned the respect the boundaries my body has and the ability to say no or cancel plans.

So in a way, being diagnosed with M.E. has helped me come to terms with being unwell with health problems that will never be cured.  For a long time, I pushed on and on with my illnesses and symptoms – even before I was diagnosed – because I either didn’t want to take time off work or let people down, but in the throws of M.E. I simply had no choice.  It’s given me a greater ability to see how important my health is and how there is no point in pushing yourself when you are clearly unwell.

M.E. also gave me insight into how judgmental and misunderstanding people can be when they are faced with working with, dealing with or living with someone with illnesses like mine – the ones that are invisible.  My husband has often said if people saw M.E., Endometriosis, I.C. or Adenomyosis and what they did to my body, they’d be completely sympathetic.  It’s given me more patience and the ability to explain my  health in a better way.

When I first was diagnosed and not working, I remember being so worried that I would never be able to work again, regardless of how many hours.  Some healthcare professionals I saw agreed, and told me that unless it was severely restricted duties and minimal hours, it was unlikely I’d be a full-time physiotherapist again.  I was even told to change my job a number of times.

I think this negativity and what felt like a “giving up” attitude motivated me.  There were things I wanted to achieve in life with my husband and unless I was working a decent amount, I wouldn’t be able to afford it.  So a fire lit within me and I worked hard to get back to full-time work.

And that’s probably my proudest achievement.

Being diagnosed with M.E. – or any other chronic health condition for that matter – doesn’t mean your life has to end, it simply has to be adjusted.  I’ve learnt to accommodate my illnesses and their symptoms in the best way possible to enable me ot live a normal life.

Unless you have gone through it, you’ll never truly understand how much being chronically ill is about balance.  Balancing medication versus side effects, activity levels versus rest or which symptoms needs the most attention.  Juggling illnesses becomes a daily task and you become so used to it.  Its a good skill to have – even if you drop the balls every now and then.

 

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