MEAW 2011: Living with M.E. – I’m Tired

I’m not normally one for writing pieces specifically for awareness dates.  I prefer to see awareness as an all-year-round thing.  But this year I am feeling particularly beaten down by the whole chronic illness thing.  What follows is my perspective on living with M.E.

People hear the term ‘M.E.’ and instantly jump to conclusions.  Perhaps they remember back to the days of ‘Yuppie Flu’, or remember that it is also known, rather misleadingly, as Chronic Fatigue Syndrome.  However they think of it, one assumption stands out head and shoulders above all others: Tiredness.  M.E., to the outside observer, is not much more than tiredness.  Yes, I am tired, but probably not in the way you first think.

  • I’m tired of the lack of understanding of what M.E. really is.  From professionals, from laypeople.  M.E. is much more than just being tired.  It is not the same as being tired from a full day at work, a session at the gym, a night of partying.  M.E. is a complex neurological condition, affecting the whole body in a multisystemic fashion – the immune system, endocrine system, gastric system, nervous system, the list goes on.  If it’s a system it can be affected.  Imagine waking up with a hangover and coming down with flu at the same time and you might have an inkling of how I feel every morning.
  • I’m tired of the lack of medical recognition and understanding, fuelled by the lack of funding into biomedical research because the purse strings are held by the psychiatric lobby.  I’m tired of the purely psychiatric approach to the ‘treatment’ of M.E., the idea that we are simply depressed and deconditioned and need to push ourselves more.  Guess what?  I’ve been pushing myself to keep going for over a decade and I’m not better yet!  What does that tell you?
  • I’m tired of this lack of medical understanding leading to a lack of general understanding, causing negative attitudes and stereotypes to remain highly prevalent – that people with M.E. are lazy, malingering, attention seeking, workshy and scrounging.  We are none of these things.  I, personally, am tired of being told that I sound like I’m enjoying being ill, or that it must be nice to finish work early.  I finish work early so that I can go home and sleep.  Life passes me by.  Yes, I really enjoy that.
  • I’m tired of having to fight to get any help whatsoever because of the huge lack of understanding.  It took 3 and a half years to get my autoimmune thyroid disease (likely a consequence of having long-term M.E.) diagnosed, from my first abnormal blood test until it was formally diagnosed, even though 3 (yes, 3!) doctors had been happy to say yes, there was a problem, but no, I couldn’t have help.  It took 6 and a half years to have my fibromyalgia diagnosed, from the time it was first mentioned, to the time it went onto my notes.  The local M.E. clinic has been running for 6 years, and I am still unsuccessful in my campaign to be referred there.
  • I’m tired of this lack of help meaning I have to resort to self and over medicating with drugs that should not be combined.  But as my chemical sensitivities mean that I am unable to take opiates and opioids, and am not offered any other forms of pain relief, alternative or otherwise, I have no choice but to be irresponsible or face not working and struggling on benefits.
  • I’m tired of having to hide my illness, of not talking about it for fear of being told I’m malingering, whining, enjoying it.  When you have a problem, do you talk to your friends and family about it?  I expect many of you do.  Why is illness any different?  We, as humans, make sense of our issues by talking about them, it doesn’t mean we enjoy having those problems!
  • I’m also tired, when I do manage to talk about things, of being told to ‘Think Positively’.  There is a special kind of positivity almost exclusive to the chronically ill and disabled.  It is what keeps us going.  Sure, we all have our moments, but we keep on going.  If we weren’t positive we probably wouldn’t be there talking to you in the first place, we’d be hiding away at home, or maybe worse.  It’s not sparkly-unicorns-farting-rainbows positivity, but it’s a real kick in the guts to be flippantly told to think positively by someone who doesn’t even begin to understand the inner strength required to just exist.
  • I’m tired of not being able to get out much.  Of not getting to meet new people, have a chat, have a laugh, without feeling unwell from a noisy, crowded, busy environment.  Of not being able to have a drink socially, or a meal out because I would be unable to lay down after eating to let my blood pressure regulate.  I’m tired of my friends being mostly online, too far away, unable to travel to me or me to them.  It should be easy to make friends, but instead I have so many variables to consider that it is easier on my body to stay home and stick the tv on.
  • I’m tired of the well-meaning, interfering comments and advice.  I don’t look unwell?  Well, bully for me!  Perhaps if I looked a bit worse there would be a bit more understanding.  You wouldn’t expect as much of me as you do.  Please don’t ask me if I’m better yet, either.  Believe me, if I was better, I’d be skipping down the street, singing it at the top of my lungs like Loony McCrazypants.  If I get better, I will tell you.  In the meantime, your question puts pressure on me to conform to society’s expectations  of healthiness.  Yes, I should be better by now, but I am not.
  • Similarly, I am tired of hearing the latest quackery on how to get better.  No doubt I’ve already heard of it, or even tried it before, probably to no avail.  Unless I hear about it straight from the mouth of a qualified medical professional whose expertise in the area I trust, I won’t be wasting my money, energy, or hope.
  • I’m tired of having to explain myself, of having to write things like this in the first place, using even more energy I don’t really have.  I shouldn’t have to explain all this – why life with M.E. is so much more difficult than people think.  Tired of explaining why I am tired of having M.E.

Yes, I’m tired all right.  Is that what you mean when you say, “Everyone gets tired sometimes!”?

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2 Responses

  1. Oh wow you in my head and in my life and you have moved me to tears I too am sick and tired of being sick and tired of being ignored by the medical profession and abandoned by people who are supposed to be my friends!! Of having to explain why I don’t have a job or a life half of the time and why I look ‘fine’ when I am so far away from being ‘fine’ it on a different planet!! Thanks for sharing really really thanks x x x x

  2. Wow, you are in my head as well.I would like to share in the hope it feels better.

    Near 7 years ago I had found my soul-mate, someone I would travel the road of life with, he shared my thoughts on parenting and took on me with my 4 kids. We were happy working thru issues regarding the kids schooling, and finding the best fits for them. 3 out of the 4 had learning needs. This man stands by me daily doing the chores and working full-time.

    I went back to work for the first time since having my kids. They needed private school and smaller classes. I was happy to be able to provide that for them. So March 2007 back to the corporate world I went, no easy job, but as a Branch Manager for an Australian bank.

    Then 3 1/2 years ago that all started to fall apart. I started to think I had taken on too much,(but I had coped before) I would come home and go straight to bed, no dinner and then struggle out of bed to tackle another day at work, wishing for the weekends so I could just sleep. I thought I was going crazy,surely my skills had not left me because I had become a mother? I would forget even the most simple conversations, let alone those that took place as part of my role as a bank manager.

    After nearly 18mths of struggling to hold down my job, I gave in and resigned, listening to my body, I would rest and tackle employment again.

    On leaving work, I got worse, not better. The more I rested the more things seemed to go downhill. Doctors were unable to answer my questions. It was my husband who hit on the link to CFS/ME, then my doctor who hit on the work given vaccine.We believe my ME/CFS started because I had a flu vaccine thru work, just prior to my health failing. We need to prove that now and we have a workcare claim which will give me back my monetary worth. But until then……me going back to work to provide for my family, had resulted in us fighting for every thing.

    We have fought to keep our home, for now. I am fighting to keep my girls in their schools. People have very little empathy or compassion, money talks and we are running out. I have sold my car (haven’t driven for 2 years anyway) cashed in our supers’ where possible. But no one seems to care.

    The government offer nothing, there are only 2 specialist in Melbourne and only 1 takes on new clients. There is very little in the way of professional help.

    I think one of the hardest things to accept is the people you thought loved you, your family and friends who seem to offer nothing. In the whole time I have been bed ridden, we have not had one followed thru offer of help, no meals prepared and drop off to help (and we could use these, my husband is a Very basic cook) It’s almost like they hear me speak, but don’t believe. If I say I can no longer wash my hair let alone dry it, then thats how it is!

    I am angry, sad, frustrated, feel of little worth, I cry to watch my kids doing chores I should do for them, but most of all I feel alone, forgotten, just waiting for someone to tell me there is a cure, and I can have my life back.

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