Friday, 25 March 2016

I'm not just tired!

There are people out there who are constantly exhausted due to their life situations, and it would not be an error to say that they experience "chronic fatigue".

This of course is where that name - "chronic fatigue syndrome" - becomes such an insult to those of us who actually have the serious disease ME.

ME is not just fatigue, and it is not about being "just tired".

This morning on Facebook I replied to an ME patient who's sister told her she couldn't possibly understand what "tired" was until she had experienced the sleepless nights of parenting babies and small children.

My response: (name changed for anonymity)

Helen, I had 4 children. First 2 were 15 months apart, then a gap of 4 years and second two 21 months apart.

I know what TIRED is as regards looking after small children!! (Lots of broken nights there & I breast fed each of them for 8 months +, so no-one else could do any nights for me).

ME is not the same as tired. In fact I hate using that word (or the fatigue one either) in relation to ME.

ME is about illness. It is akin to having 'flu after every exertion. It is about the risk you take every time you even vaguely push yourself, because you may not return to your previous level.

Tired & exhausted - are used in normal parlance. They tend to imply you have done something significant.... Being in a state where this exhaustion is chronic - due to babies or whatever - is not easy either.

So in some ways your sister is right. You have not experienced it, so you can't know that level of dog-tired and exhausted that she has to push through daily. I knew it. I pushed through it for years. It can be its own kind of hell, despite being done with a happy heart due to love for your children.

The difference is, it is a tired you can give a reason for, and a tiredness that you CAN push through... It's not easy to push through it of course, cos that is what exhaustion is all about! However remove the reason for the tiredness, take a rest for a few days, and things get back to normal. The tiredness can abate when rest is forthcoming.

Now ME is different. Pushing through any sensation of tiredness is a serious health risk. People who become severe talk of having pushed themselves to do things....


So I will tell you, I feel LESS tired now that I am ill with ME than I felt when I was a young mother with 4 children. (They are all now grown up & have left home.) The reason that I feel less tired, is down to the fact that I pace myself. Every time I have even slightly pushed past the point when I start to feel "tired" has caused relapses of a long term nature.

I know now that feeling "tired" is a dangerous state. I use that as a signal that it is time to stop. In fact if I wait for that signal, it might be too late, the damage may be done.

And if I do have to push on (out somewhere perhaps - no choice) then the risk of my body simply failing to function, is higher than it ever was when I was dog-tired from parenting.

Sorry got on a roll there. (((Hugs)))



So the word fatigue does us no favours. Neither does the word tired. We are all ill, some quite seriously so, and others at risk of becoming seriously so.

The experience of ME is beyond the realms of normal human experience. Therefore, normal words like "tired" and "exhausted" do not apply to our situation.

We are ill, and exertion of any kind makes us more ill! 

So the sooner we can ditch any reference to ME as being any form of "fatigue" the better.


*****

Another post on that word "tired": Are You Tired Sally?

7 comments:

  1. I did the whole mothering thing as a controlled experiment: I had two little boys while working full time as a physicist at Princeton. Hard. Exhausting. Exhilarating. Satisfying.

    I got CFS - miscarried one baby, and then had my daughter.

    Exhausting is NOT the right word for trying to rear three small children with CFS. And I had HELP. Collapse is better; trouble breathing because it took too much energy; the frustration of knowing what they were losing because I had nothing to give.

    Your friend with the small children would probably do fine with a full time housekeeper and a nanny - then she could spend energy left after a full time job enjoying her kids.

    Money is the problem for most families - they need the mother's income, or want it, and they can't afford the kind of help that would make life easier. So they muddle through, generally tired, sometimes exhausted, but healthy underneath all the while.

    We don't.

    ReplyDelete
    Replies
    1. Alicia - I cannot imagine trying to raise a family whilst also ill with ME. I am forever grateful that my youngest was already 16 when I became ill. xx

      Delete
    2. You do what you have to do - as best as you can.

      People are incredulous that I homeschooled. Whereas I couldn't imagine having to get kids ready for school every day until they are old enough to do it all themselves. Homeschooling happened on OUR schedule - and they were big readers.

      The amount of time parents waste - and kids waste - just getting to school and back is astronomical.

      Delete
  2. Sometimes you can't understand until you walk in those shoes. About 9 years ago I started a new job in an office with 5 women. One of the women was the same age as my daughter. I wore 3 inch heels to work, I always have. This young woman wore dresses with flats. I mentioned once to her that the dress would look better with heels. She said she has never been able to wear heels due to back pain. I pooh-poohed her comment and told her that of course there is pain in wearing heels, but we do what we have to for fashion and beauty.

    In 2013 I was stricken with Sciatica. I don't know if you know what that it but it's a horrible, crippling, painful disease! It took me about 6 months to recover and still it is something that I will always have. After that episode I discovered to my dismay that I could NO LONGER wear heels! I had to wear ugly, disgusting manly looking flats! I was crushed and got rid of all my dresses. To this day I still can't wear heels.

    I took a good long look at myself and went up to that young co-worker that I pooh-poohed and apologized for my rude and inconsiderate comment and now I think twice before I comment on someone's disease or pain not being valid.

    Luckily as we get older we do get wiser! I'm sorry for your pain with ME and I would never tell you that you don't know what fatigue is because you haven't experienced this or that, your pain is yours and it's valid!

    ReplyDelete
    Replies
    1. Alicia. Your story made me smile - few folk are as self-aware. & I'm so sorry to hear you also had to give up heels due to your health. xx

      Delete
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