Around 10 years ago I was diagnosed with chronic illness. Both M.E and Fibromyalgia and more recently diagnosed with Joint Hypermobility. These illnesses have changed my life dramatically . I have learned to adapt the hard way.
I had to give up working as a Driving Instructor and my OH then became the main breadwinner.
M.E and Fibromyalgia affects my life daily, without fail it is ALWAYS there. The only way to describe it to others is RELENTLESS!
Walking normally feels like walking in a swimming pool, and every morning I wake up feeling like I have just gone 10 rounds in the ring with Mike Tyson. In short just think ‘proper’ flu without the head cold and you are on the right lines.
That’s before we even get started on the pain levels throughout my body and more recently in my hands and ankles (due to the Hypermobility). Everything hurts……………..all of the time, with no respite!
Most of you will know by now I have ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Fibromyalgia ( widespread musculoskeletal pain) and more recently Joint Hypermobility ( in hands- when joints can dislocate!). I have had chronic illness and pain since 2009 and even with high levels of pain medications including morphine I still experience pain 24hrs a day, 7 days a week and 52 weeks of the year. In truth, I cannot remember certainly in the last 7 yrs or so of a time when I have been pain free. I read recently that the full list of symptoms of an ME or Fibro patient is the same as a patient with AIDS around 2 months before death! The most frustrating thing about my condition is that it is completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin………….NOTHING. BUT MY BODY IS WRACKED WITH PAIN DAILY. It also varies day by day which doesn’t help at all. It is generally ( in my case) at it’s worst in the winter. I’ve also written about ways I can use heat to help with pain levels and trying to stay warm here as it’s just not possible to have your heating on 24hrs a day!
So I thought I would share a code for what we say and what we actually mean to help you gauge how we feel on a particular day.
Now it may be hard to believe – how can someone be in pain all of the time even with very strong medications? A normal person’s brain is not equipped to understand chronic, consistent pain at all. Yes they can totally empathise if someone breaks their arm, or has the flu or even something like appendicitis because naturally our brains can understand what’s seen as danger or acute pain – pain that will be there until that body part has healed itself…………short term pain. They can imagine from past experiences how painful those things could be, but the normal brain is not equipped to understand a pain that does not go away! It’s just how we are made- and therein lies the problem.